Arthritis Today's Hot Topics

It's that time again!

2007-11-08T21:02:00.000-05:00

Today is the first day of the annual meeting of the American College of Rheumatology (ACR). Each year thousands of rheumatologists, researchers, nurses, therapists and others involved in caring for people who have any of the 100 or so arthritis-related conditions descend on a major city's convention center. This year, they're all in Boston. Unfortunately, this year, I'm not. I love being at the ACR conference amidst the collaborations, explanations of what's been learned and press conferences about key scientific or clinical studies. But this year, I'm a nursing mom needed more here at home. In my place, Arthritis Today's nutrition and fitness editor, Kenna Simmons, is on site in Boston gathering up loads of information for us to share with our readers.

Today, one of her e-mails sounded ominous, as she told me about Dr. Gurkipal Singh saying there was an "impending health disaster." Dr. Singh was describing a growing problem that he calls the "gastroprotection gap." With the number of people developing arthritis on the rise due to the aging of the baby boom generation, the use of nonsteroidal anti-inflammatory drugs (NSAIDs) has increased among older Americans. Older NSAIDs, such as aspirin, diclofenac, ibuprofen and naproxen, are known for causing gastrointestinal problems, such as ulcers. Beyond the pain of ulcers is the seriousness of the situation if they start to bleed – especially among the elderly. Bleeding ulcers can be fatal, so preventing them (and monitoring for them) is important. (Learn more about NSAIDs and side effects at www.arthritistoday.com. Click on Drug Guide.)

Protection against bleeding ulcers comes in the form of other medications, called proton pump inhibitors. These medications, such as Nexium, Prevacid and Prilosec, reduce the amount of acid in the stomach, whereas the traditional NSAIDs increase it. Dr. Singh's study shows that doctors had been getting really good at prescribing an acid reducer when they prescribed an NSAID – until the COX-2s came on the market. The COX-2s are a type of NSAID specifically designed to eliminate the gastrointestinal side effects. When the COX-2s Vioxx and Bextra were popular treatments, the rate of serious gastrointestinal complications was cut in half. But now that two of the three COX-2 drugs are no longer on the market (Celebrex still is available), and use of the COX-2s has declined, Dr. Singh found that the complication rate is jumping up again.

His study of Medicaid recipients in California shows that the percentage of people who receive medications to protect their stomachs while taking NSAIDs decreased from 35 percent to 14 percent in just one year (from 2004 to 2005). Ten years ago – before COX-2s were available and doctors had gastrointestinal complications top of mind – 79 percent of people were given stomach-protecting drugs. Since Vioxx and Bextra came off the market, gastrointestinal complications have gone up 21 percent. With the aging of the population, the increase in arthritis symptoms such as pain and swelling, and the return to using traditional NSAIDs again, Dr. Singh's study is a strong reminder for doctors to protect the stomachs of their patients when they hand out a prescription for an NSAID. And it's a call to action for patients to start questioning their doctors about the side effects of their arthritis treatments and how they can protect themselves. If both doctors and patients can take on that responsibility – and carry out their duties – I have hope that we'll avoid an impending health disaster.

Check back tomorrow to see what Kenna digs up in Beantown.

U-N-C

2007-10-18T14:00:00.000-04:00

In my last post, my rheumatologist said it was OK for me to take the conservative treatment route until I cried Uncle. I'm more than half way to crying "Uncle." And I mean crying.

My horrible morning is now affecting my afternoon. As I was getting baby Katie ready for daycare this morning – she started this week – everything came to a head. The pain and stiffness has been wearing me down, being up at night to feed the baby has been wearing me down and having to part with my precious newborn has been eating at me all week. A minor argument with my husband over how exactly to prepare the bottles for daycare was the proverbial straw. A brief bout of shouting brought tears of frustration, anger and resentment that just kept flowing. Even now as I recall it, I'm tearing up. The pain makes it all worse – or is it the other way around?

Even as I was in the midst of a good cry this morning, my rational self was thinking, "This is just the pregnancy hormones shifting downward suddenly." But then I wondered if it could be the inflammation building. What came first this week? Did feeling down about having to put Katie in daycare at only 9 weeks of age increase my inflammation, which increased my pain? Or has the inflammation, which has been increasing since late in my pregnancy, finally trigger a bit of depression, which caused me to feel stressed out, overly tired and in pain? I study released last week suggests the latter explanation is most likely. German researchers say an increase of inflammation-causing cytokines can cause an imbalance in the brain that leads to a deficiency of serotonin and an increase in feelings of depression.

I could almost feel the bad chemicals flowing through my blood vessels as my stress level rose. I tried to calm down -- I didn't want to upset the baby. I continued getting her ready for daycare, with tears running down my face. She stared at me as if she knew something was wrong and then she smiled, like she wanted to cheer me up! I nursed her and she smiled. I changed her diaper and she smiled. She was completely carefree and happy, and I didn't want to screw that up.

I re-did my makeup and took Katie to daycare, trying to be my usually happy self, and it almost worked. Even though it's only day four at Katie's daycare, the caregiver seemed to sense that I had been upset this morning. I admitted to a certain level, but didn't go into how much the pain in my joints seemed to magnify the difficulty of leaving Katie for the day. Just yesterday, the same woman had commented on Katie's long fingers. I told her (as I stated in a previous blog entry) that Katie apparently had my grandmother's pretty, delicate hands, although I only saw her hands gnarled and curved because she had RA so bad. I didn't tell her I had it, too, or that I worried Katie someday would as well. Maybe I was too tired to get into a conversation about it or felt it was too soon in our new relationship to divulge such personal information. Looking back now, it was a great opportunity to educate and advocate, but I just wasn't in the frame of mine then.

I came back home and sat down at my desk. I read the news of the day. I made a note to check into the possibility of flu shots helping to reduce the risk of heart attacks, which occur more often and are more often fatal during cold and flu season. I tried to understand how overriding President Bush's veto of the State Children's Health Insurance Program could affect those of you out there on Medicare who need a 'breakthrough" medicine to treat your arthritis. I saw the irony in a new study that will be released tomorrow: the way brain cells communicate with each other may provide the ability or inability to cope with stress and depression. Depressed people showed a 40-percent increase in levels of a compound called BDNF, and researchers theorize that keeping BDNF from being released into a specific part of the brain could increase coping ability. I secretly hoped that today's meltdown was due to a temporary surge of BDNF and that my brain cells would get back to communicating well today. I did a task for a co-worker, though, and admitted I really needed a nap, a walk and a big cup of coffee. I tried to think but felt foggy and just stared at the piece I'm working on for a while. I drank the big cup of coffee. I took a 20-minute nap around noon. But still, my mind just doesn't seem to be working today. I apologize, as I'm trying to work on pieces for all of you to read in the magazine or on the Web site, but maybe tomorrow will be more productive. I'll go exercise later and try to clear the cobwebs. I'll try to get some extra sleep tonight. And I'll feel much better when I get to hold Katie again at the end of the day.

Til then, I'll just have to accept the fact that, being a human with a chronic condition, there will be good days and bad days, and that the bad days also are only 24 hours long. I'm well into those 24 hours, so things should be looking up soon.

Decisions, Decisions

2007-10-08T11:56:00.000-04:00

Today's my first day back to work since having baby Katie, and my 7 a.m. rheumatologist appointment was a great way to start it off. As I sat in the waiting room nursing Katie, I was internally lamenting over the fact that when my appointment was over, I'd hand little Katie over to my husband for the day and get back to reading/writing/editing. Of course I instantly became used to holding her through the day, and, as any mom knows, it's immensely hard to cut back on that. That bond forms pretty darn quick and is amazingly strong. Any attempt to loosen that bond is made even more difficult by friends asking, "Do you HAVE to go back to work?" Financially, yes. (And then guilt sets in.) But when I overheard an older woman's plea to the receptionist at the rheumatologist's office this morning, I knew I had an important job to return to.

The woman's disability payments had been cut off suddenly, apparently due to a mix-up in paperwork. She was desperate, and I could tell by looking at her that she had been affected by RA for many years. She obviously had trouble maneuvering physically, and now I knew she was having trouble maneuvering through the healthcare system. My heart went out to her, especially when she had offered to hold Katie for me to make it easier for ME to fill out my paperwork! She was so sweet to me, but so spicy when it came to dealing with her current problem.

I internally cheered for her when I saw her massive folder of papers accumulated over decades of doctor visits. Every good patient should have one. And I smiled when the petite woman seemed 7-feet tall as she succinctly explained what had gone wrong and how it needed to be fixed. She was organized and assertive, just as we tell readers to be at their office visits. I don't know her outcome, but I have a good feeling she got what she needed and will be just fine.

I went in for my appointment -- my first since delivery -- and had an important talk with my doctor. This is where the tough decision comes in. I've been breastfeeding Katie almost exclusively, except for a daily bottle of formula to keep her used to it in anticipation of starting daycare next week. However, the doctor noted the swelling and tenderness in my fingers, wrist, feet and ankles. There's no denying it's there. I could go back on the DMARD now and stop nursing, or I can manage my arthritis conservatively and continue breastfeeding. My choice boils down to this: Prevent deterioriation of my joints and ease my pain, or give Katie the benefits of breast milk -- one of which may be reducing her future risk of developing chronic diseases. I opted for the conservative route, you'd think because maternal instinct is to take care of the baby before self. As it turns out, breastfeeding Katie may help me, too.

According to a 2004 study, women who have breastfed their babies for a lifetime total of more than 12 months (so a year for one baby or a total of 12 months among several children) have a reduced risk of developing RA. Well, that didn't hold for me. Among my three older children, I've breastfed for a total of about 48 months already -- 12 months or longer for each child. In digging deeper, though, I found a study from the University of California San Diego that shows women who have breastfed longer than 12 months have "significantly higher cortisol levels than women who breastfed for shorter durations or not at all." And that association was found to be stronger in women who had three or more children (phew!). Why is this good news? Because, as the researchers explained in the 2001 study, "increased cortisol and increased duration of breastfeeding may play protective roles in certain autoimmune diseases, such as RA." Apparently, cortisol – a hormone often associated with increased stress – may contribute to the beneficial effect of being a lactating mom.

So a lactating mom I am. And I'm also going to have to be a really good patient. That is, taking the conservative route takes work. As my rheumatologist said, I've got to stick to a routine, make sure I eat really well and regularly, take rest breaks, try to sleep well (even though it's disrupted with night feedings), keep my stress level down and get some exercise. The goal is to stave off a postpartum flare so I can stay off medication for now, all while protecting my joints from sustaining damage and keeping pain down so I can function as well as possible. It's not as easy as taking the medication, which gives me some confidence that my joints won't deteriorate and my pain will be minimal. With that confidence, doing all the good things simply makes me feel better. Right now, doing all the good things is how I will get by until, as the rheumatologist says, I cry Uncle.

Those nasty postpartum flares tend to happen most often between three and six months after delivery. I'm at two months now and truly hope being a good patient will get me through the coming months without a worsening of my RA, so I can be a good mom and worker, too.

Meet Katie! She's Not Perfect.

2007-09-21T22:12:00.001-04:00

Here, my first baby, Steven, and what will be my last baby, Katie. He's a proud big brother, and I'm so proud of him for being so tender with her at what is such a tough age. He'll be 14 on his upcoming birthday. I know 14 years is quite a span for siblings; I never thought I'd have a child in my 40s. I do remember saying back when I was 16 or so and was dreaming with my girlfriends about our futures, that I'd want to have four kids. But, who really puts stock in those teenage whims? When my daughter Abby was born nearly 9 years ago, and I was 33, I thought that was the end of my childbearing years. After all, 15 months before Abby, I had given birth to our son Ryan. At 33, we had been blessed with three great, healthy kids. Why would we want to tempt fate? Our family felt complete – or so I thought.

I have to admit, now that a fourth child is here, she's filled a void I never really knew was there. I'm thrilled to have another baby, although I never thought I would. My husband and I never planned to have another one, partly because my doctor told me I was premenopausal and then that news was topped with the diagnoses of both autoimmune thyroid disease and rheumatoid arthritis. Baby Katie has proven to me that my body is powerful and resilient, even though it's affected by two chronic diseases. My body isn't perfect, but you know what? Either is my brand-new baby! Just a few weeks into her life, she's already afflicted with sensitive skin. She has eczema on her face. She has a few mood swings. She can't see more than a few inches in front of her yet. She can't hold anything, stand or walk. She's healthy, for sure, but she's not perfect. Yet she smiles. She trusts completely. She makes happy sounds. She oozes love. Even though she's brand new to this world, she's not perfect – and boy doesn't that take the pressure off of trying to get there! If newborn babies aren't perfect, why do we adults think we can achieve perfection? How stress-relieving it would be to realize that although we'll never be perfect, we are born with all we need for life.

Like I said in the last post, I've spent alot of the past 6 weeks just staring at Katie. And I've been thinking about how life starts, how it ends and how it is filled in the middle. At just six weeks old, Katie has already taught me an important life lesson: just relax, trust and be happy. And have confidence that your body will do what it needs to do, when it needs to do it. Hers will do what it needs to grow from here on out. Mine did what it needed to during pregnancy. That doesn't mean I won't try to continue to improve my body and health now that I won't ever be pregnant again. On the contrary! I've been given an amazing opportunity to regain faith in my body and I don't want to waste it. I want to put it to good use to keep my RA at bay. I'm fortunate to have lost more weight than I gained during pregnancy. Who knows whether that's from an increased metabolism or having to pay really close attention to my diet and activity? Regardless, I'm going to run with the positive change -- literally. My goal is to run again. Maybe it's a desire to run away from the RA that was mostly quiet during pregnancy, so it won't be able to catch up with me. The stiffness and soreness is increasing in my fingers, wrists, feet and ankles -- I won't let it take hold.

I'll certainly work up to running, slowly and wisely. I've been walking and doing some abdominal exercises since Katie was born, but this week I'll re-start working out with some weights. I'll keep you posted on my progress (and Katie's!), and will share tips and news I learn along the way. Feel free to post a comment and do the same! None of us are perfect, but we can make the most of our amazing opportunities to live, love, trust and be happy -- whether with our bodies, our relationships or our lot in life.

Rediscovery

2007-09-21T21:36:00.000-04:00

Welcome back to the blog! I've been on a brief hiatus since giving birth to a little girl on August 10. Katie, our fourth child and second daughter, was born into a family who was completely ready and excited for her arrival, yet so completely overwhelmed by the miracle of it all. The photo I'm sharing here is of Katie's two older brothers and sister, as well as her Nana, seeing her for the first time. (Note my teenage son with cell phone in hand -- his baby sister's photo is now the wallpaper on his phone's screen. So much for his thinking it was no big deal I was pregnant again!)

So why haven't I blogged sooner? Well, besides the adjustment to having a new baby around -- sleep deprivation, seemingly constant nursing, diaper changes and squeezing in quick showers -- I have been spending time simply staring at my baby. First or fourth, it still amazes me, and always will.

I try to take in all her petite features -- burn the image of her rosebud lips, tiny nose and big blue eyes into my brain for future reminiscing. I listen intently to the sound of her breathing and capture the smell and softness of her skin and the full range of expressions she already has. While staring, I'm just amazed that although she's so small, she's entirely complete. I instantly noticed how long and slender her fingers were, how delicate and pretty her hands and nails looked. My mom tells me my grandmother -- the one who died of RA when I was a toddler -- also had beautiful, long fingers before RA took hold. Sadly, those beautiful fingers and hands ended up so gnarled and dysfunctional. I pray that Katie never has that fate.

Next post: baby pix!

Take care,
Donna

Hopeful and Positive

2007-07-25T11:41:00.000-04:00

I am very close to delivering my fourth child – a baby girl who in all tests and ultrasounds has proved to be healthy and developing well. I am excited and not unaware of how very fortunate I am. I know autoimmune diseases can make conception and pregnancy challenging. I also know that being fearful of potentially negative outcomes can make pregnancy – and parenthood, for that matter – equally challenging.

I received a comment to one of my recent blog posts that said, "I truly do not comprehend why a woman would choose to give birth or raise children when she knows she has arthritis, a lifelong chronic disabling disease. It baffles me, and I wonder WHY as well as HOW one plans to physically be available for a baby, then a toddler, and then a youngster, etc."

Frankly, I was shocked at that one, and I'm sure many you will be, too. (I look forward to reading your comments!) The quick and simple answer to that comment is that I have hope and a positive attitude. Working here at the Arthritis Foundation, I hear about and see people who range from mildly affected to severely affected. I know what they go through and how they cope. I also know they never give up – and neither do I. To prepare each issue of Arthritis Today and write or edit each article, I continually read about the research going on in the field of arthritis. I know what's being studied, and I talk to those doing the studies. I know geneticists are very close to finding all of the genes involved in autoimmunity. I know tissue engineers are on track to growing cartilage for transplantation into bad joints. I know researchers keep finding markers of inflammation that can be potential targets for new medications. Because of all of that, I have hope that with continued research, treatment of arthritis will improve dramatically in coming years. I know that although it is lifelong and chronic, it does not have to be disabling.

I know treatment certainly has improved since my own grandmother was physically disabled back in the 60s. Being told to stay in bed to take pressure off her joints and being injected with gold didn't do much to help her RA improve. Her body weakened, and she died in her mid-50s with eroded joints and a damaged heart and lungs. When I'm in my mid-50s, I know for a fact I will be in much better health. Rheumatologists have learned alot since then, and I follow my rheumatologist's advice. I eat right. I exercise. I don't smoke. I drink alcohol, when not pregnant, in moderation – maybe one glass of red wine at night and maybe two on a weekend night with friends. I take my medications as directed. I make sleep a priority. I take time -- if only a few minutes when I get home from work or before I go to bed -- to relax. I have a great relationship with my husband, kids, mom, sister and extended family. I have supportive coworkers and friends. I have hobbies. I'm involved in my community. I enjoy life. And because of all that, I never questioned having kids or raising them. I have alot to offer society, and a chronic disease doesn't change that.

I think my three other children would say that I've always been available to them – both physically and emotionally. I had all three of them before being diagnosed with RA, but slowly and surely, the symptoms were making themselves known throughout the past decade. Still, I play ball with them; we walk, bike or swim together; my oldest son and I workout at the gym together, and my younger two can't wait until they're old enough to join us. We talk about anything and everything under the sun. We laugh – alot. We draw pictures, play cards and games, build with Legos or pretend with dolls. We watch movies, go miniature golfing, hike and camp. I help with homework and school projects. All three kids are involved in sports, and my husband coaches one of the teams. We're always at practices or games. Afterward, some nights we go home and cook together. Other nights, we run errands and get takeout. On weekends, we put on music and clean the house; during the week, the kids help out with chores after school so I can spend time with them all at night. My husband works from home full time, so he does the laundry. Our life is full and busy, but it works. We all make it work. And therefore, my having a chronic condition does not preclude both my husband and I from having a family and a full, happy life. I can't – and don't – imagine it any other way. And I truly believe that in life you get what you give. If I thought I could do nothing more than sit on the couch or take to my bed, I would be completely unhappy. If I get up, feel productive at work, contribute to society, engage in helping others and take care of my body, life gives alot back to me. Yes, I have a chronic disease, but I also am able to live. And that's the ultimate "why" and "how" for being available to my children, regardless of their age.

This fourth child coming in a matter of days or weeks will be delivered from my 41-year-old body that has been diagnosed with RA. I don't feel any different than I did when I delivered my last child 8 years ago. Actually, I feel better. Honestly. I feel stronger and healthier now. Perhaps it's because my diagnosis made me make my health a priority. When I got pregnant, my level of inflammation was down, I was exercising regularly, counting calories to keep my weight down and taking time to rest. Eight years ago, I knew my wrists hurt when I held my babies, but I was told I had tendinitis and that carpal tunnel syndrome was common in moms with young children who are constantly picking up kids or car seats. I knew my hips hurt, but was told it was because I held the kids on the same side and threw my back out of alignment. I knew my ankles hurt, but was told I sprained them. My doctor, although he knew my family history included RA, never tested me. I very well could have had RA back then, but didn't know it. So this time around, I'm ahead of the game. I know what I need to do now to keep the inflammation down. I'll go back on my DMARD after delivering the baby and nursing for a few weeks. I'll be coming back to work. I'll continue to be involved with my family, friends and community. I'll continue to take care of myself. And I'll still be happy and hopeful that I'll be controlling my arthritis. It will not control me or my decisions about how to live my life.

What Goes Around, Comes Around

2007-06-27T13:37:00.001-04:00

I had a very interesting phone call with a recent college graduate yesterday. Jennifer, who currently works on writing grant proposals at the Rhode Island chapter of the Arthritis Foundation, is interested in pursuing medical writing and publishing as her career. The president of the R.I. chapter put her in touch with me to get some career advice. Like me, she majored in biology but decided she really enjoys writing about the science. She had questions and I loved sharing my thoughts -- we hit it off well, and her eagerness to explore the same career path I took reinvigorated me.

Her questions made me think about a few things I hadn't focused on in some time:
Did I enjoy my career? Definitely, yes -- love it and love being able to provide people with information they can use to improve their lives.

Any regrets? None, except for the ocassional twinge that maybe I should have gone for that M.D. degree years ago, if only to lend more credibility to what I write. If I had become a doctor, I likely would not have the time, thanks to managed care, to give the advice and information I can provide to people now – and doing that is what makes me happy.

Room for growth? It is what you make it.

Is the field growing? Yes and no – health and science writers are fading away from newspapers but showing up in droves on Web sites, blogs, podcasts and other new forms of media. Like with most careers, there will be job security in the future if you're good at what you do.

Must you be passionate about it? Most certainly. But that applies to any career, too. It makes no sense whatsoever to spend your life devoted to a career you don't truly love and feel passionate about. Otherwise, it's not a career, but just a job that feels like drudgery. No happiness there.

Why do I love it? Hmm. I thought back to something interesting I read years ago explaining the overlap and similarities between the scientific process and the process of researching an article and reporting on the findings. After having gone through scientific training herself, I was sure Jennifer would benefit from the analogy. Like a scientist, a medical journalist must make observations through reading, talking with editors, writers and scientists that lead to questions – the (a-ha moment). Then, a hypothesis is formed. A scientist will come up with questions to be answered through an experiment, whereas a medical journalist will come up with questions for interviews. After the experiment or interview, both the scientist and medical journalist will read through all the data collected and come up with a plan for either writing an article or asking more questions. With a bit of luck and lots of hard work, both the scientist and the medical journalist can get to the hoorah moment – a great study that leads to a Nobel prize or a great article that leads to a Pulitzer prize. The challenges in finding new angles within a slowly building base of scientific knowledge is what makes me love it. When I'm really into a subject, I lose track of time and that feels great. I get the same feeling when I play the flute or piano – getting lost in creating an article feels more like creating art than simply writing a story.

And that brings me around to the "What goes around, comes around" theme today. Twenty years ago I wrote a research paper on vitamin A and cancer. Back then, scientists saw great promise in the carotenoids of vitamin A – through foods like broccoli – being able to reduce the risk of several types of cancer. I remember sitting at a glass-topped table in my parents' home pouring over dozens of books and medical journals I took out of the library. This was back in the dark days before the Internet -- no PubMed, no Google searches, no RSS feeds! I was fully immersed in learning all I could about the topic and figuring out the puzzle. I enjoyed every minute of research, even though I didn't even notice the minutes or hours tick by. Once I got a handle on it all, writing the 20-some page paper flowed easily. Yes, writing about science was what I loved doing. I got an A on the paper and soon after got hired as a bona fide employee of a national health publishing company.

A few years into that job, I found myself writing about vitamin A again. This time, it was a corporate report on the benefits of vitamin A for children in Africa. The vitamin easily could prevent blindness and even death – if only the children in Africa weren't nutritionally deficient in vitamin A. Each year I created the annual report on the company's vitamin A intervention program.

Well, I hadn't thought about all that in years. But as I talked with Jennifer yesterday, I noticed a study printout sitting on my desk about vitamin A possibly being able to fight rheumatoid arthritis. Last week, researchers in California at the La Jolla Institute for Allergy & Immunology found that retinoic acid (derived from vitamin A) could control inflammation by keeping the immune system from attacking tissues. It worked in mice, anyway, and time will tell whether it works similarly in humans and could lead to new treatments for RA and related conditions such as psoriasis or colitis.

In either case, vitamin A research is in the news again. I've been following it for years and haven't tired of it in the least. It's fascinating to see what scientists know and how it evolves over time. Yes, it can be maddening to hear that one day something is helpful and another day to hear that it's harmful. But picking up on those apparent flip-flops means you're observing science (and journalism) as works in progress -- you're part of it all.

Hopefully Jennifer is excited to start tracking subjects that interest her now; over time a few will pop up as her favorites, and she'll find herself losing hours to delving deep into some topics. Speaking of vitamin A and spending hours of research time again ... be sure to look at what I found regarding vitamins in the upcoming Sept-Oct issue of Arthritis Today. In that issue will be our 2007 Vitamin Guide with background information on the vitamins and minerals your body needs, as well as whether research showing any benefit for arthritis and related conditions exists. If you can't wait until then, you'll find nutrition information on our new and improved Web site: www.arthritis.org/ArthritisToday.

Keep reading... I'll (happily) keep writing!

Stuck

2007-06-21T14:40:00.001-04:00

It's been a few weeks now since I've had to start dealing with gestational diabetes along with RA, pregnancy and autoimmune thyroid disease, but you know what? There's always somebody who's worse off. Unfortunately, it's my next-door neighbor – a little 3-year-old girl named Rebecca.

The day my obstetrician said I'd have to start tracking my glucose levels and meet with a nutritionist to get started on the strict low-carb, low-sugar diet, little Rebecca was in the hospital unbeknownst to me. She had been at a regular check-up with her pediatrician when something clued her doctor in to a possible high glucose level. They tested her blood right there at the pediatrician's office and found her glucose level was in the astonishing range of 400. (Normal is between 80 and 100 or 120 two hours after a meal). Immediately, they sent Rebecca to the hospital.

Sure enough, Rebecca was diagnosed with type 1 diabetes, or juvenile diabetes – an autoimmune disease, just like my rheumatoid arthritis and thyroiditis. For the rest of her life, she'll be on medication. She's now suddenly at a high risk of kidney problems, blindness and future amputation. And, like me, she needs to get stuck four or more times a day to have her blood glucose level tested. I don't mind needles and I can handle getting shots or an IV line. I've done it before, and I'm a big girl now. I can handle pain. But after several weeks of testing my blood sugar four times a day, my fingertips are sore. They have little black dots where the blood has clotted recently. The skin is cracking where I've hit the same spot more than once too many times. It's uncomfortable, but I'm 41 and can deal with it.

My first thought, upon Rebecca's return home from the hospital and hearing about her diagnosis was, "How is her mom going to hold her down to prick her tiny fingers or give her a shot of insulin?" But guess what. Rebecca is as big and brave as I am. The second day she was home – after an excrutiatingly long day where she and her parents were educated about her condition and what it would take to manage it – she ran over to my husband and said, "Want to see me test my blood?"

Amazing. Even at three years old, she knew that she has to endure this to take good care of herself. She knows the medicine makes her feel better. And, when her blood sugar is too low, she knows that sometimes she has to have a snack – even if she doesn't want to stop playing to eat it. She's out riding her little bike and running around the yard every day, and her parents are out there doing it with her. Their lives have changed forever, too. Rebecca's mom has changed what she cooks, and they've become stringent about the times that they eat. It's probably been harder on the parents than on Rebecca, as they learn to gauge what foods have the best effect and how much to balance the insulin and food to keep her steady.

They're doing what needs to be done because it's crucially important to take necessary steps – just as anyone dealing with a chronic illness must. The disease, like RA, will never go away, and if good care isn't taken, the toll on health will be great. As I thought about the coincidence between the timing of both Rebecca and I having to deal with diabetes, albeit on greatly different levels, I also thought about the children with RA I met at last year's AJAO conference here in Atlanta. Like children with juvenile diabetes, those with juvenile arthritis often need to endure needles daily. And they do. Like Rebecca, they know it makes them feel better. They know it lets them function better, which means play better or be "normal" at school. They adapt quickly and generally take it in stride.

As my pregnancy winds down, this year's AJAO conference will be gearing up. In two weeks, kids, parents and volunteers will be descending upon Hershey, Pennsylvania (one of the best-smelling towns on Earth!). They'll share their stories, find solace in people like them who can understand what they endure every day, and they'll renew their hope for the future. (Learn more about the AJAO conference by going to www.arthritis.org.) Above all, they'll have fun – and function – thanks to the medications that make them feel better. It's tough work, but it's worth it.

I'll continue to stick myself, watch what I eat closely and make sure I get out and walk and swim. And I'll think of all the courageous kids I've met each time I do.

News is Out About Gout

2007-05-22T12:12:00.000-04:00

Although more than two million people in the United States currently have gout, an astonishing 40 percent of the general public doesn't even realize gout is one of the most painful forms of arthritis, let alone that it's the most common type of inflammatory arthritis in men older than 40, according to the newly formed Gout & Uric Acid Education Society (www.gouteducation.org). They have partnered with the Arthritis Foundation (www.arthritis.org) with hopes of changing that statistic by raising awareness today during the first-ever National Gout Awareness Day.

Gout is caused by an accumulation of uric acid in the joints. The excess uric acid (called hyperuricemia) can come from overeating foods high in purines – during digestion, purines are broken down into uric acid that your body either cannot excrete fast enough, or your body may make too much uric acid. But the condition, which causes burning, stabbing pain and swelling, can be tamed. "Hyperuricemia can be managed and controlled with medication and through adjustments to diet and lifestyle," says N. Lawrence Edwards, MD, chairman and CEO of the Gout & Uric Acid Education Society and Professor and Vice-Chair of the Department of Medicine at the University of Florida in Gainesville. "We formed the Gout & Uric Acid Education Society to educate the public and the health care community about gout and the related health care consequences of high uric acid levels, with the aim of improving the quality of care and minimizing the burden of gout," he says.

Dr. Edwards is the expert who reviews the gout information in Arthritis Today's annual Drug Guide (www.arthritis.org/ArthritisToday). I've had the opportunity to discuss gout with him over the past several years, as we've updated the information in the Drug Guide. We're still waiting to see whether the new gout drug febuxostat will be approved by the FDA, but in the meantime, gout can be controlled by allopurinol (Lopurin, Zyloprim), if your body produces too much uric acid, or by probenecid (Benemid, Probalan), if you don't excrete uric acid fast enough. Colchicine can be prescribed to help reduce the pain and inflammation of gout attacks, too, as can NSAIDs or corticosteroids.

If you have gout, though, you can't just take the uric acid-controlling medication when an attack occurs – the medication must be taken for life to keep uric acid levels in balance. You must also follow the diet recommended by your doctor to keep uric acid levels from getting too high. Rich foods and beer aren't the only culprits in gout attacks; sometimes perfectly healthy foods such as certain types of fish or vegetables can be high in purines and raise uric acid levels. Exercise also helps reduce gout attacks by improving circulation and metabolism, to help the body remove uric acid, and getting body weight into a normal range – obesity quadruples the risk of developing gout. And having gout means more than the ocassional painful attack. The uric acid crystals depositing joints can lead to destruction of joints, along with kidney problems.

Also important, especially in these summer months, is staying well hydrated by drinking water. (Look for news on water's role in decreasing gout attacks in the July-August issue of Arthritis Today.)

In the November-December 2005 issue of Arthritis Today, we reported that gout is not just a disease of men who overindulge. Women get gout, too, although usually after menopause. When estrogen levels decline, uric acid levels increase, but it takes several years until the levels increase to the point where crystals form. From 40 to 60, more men than women have gout. Around age 60, men and women are about even, as far as gout is concerned. But after age 80, more women than men have it.

If you already have a form of arthritis, such as osteoarthritis (OA), rheumatoid arthritis (RA), ankylosing spondylitis, psoriatic arthritis, or one of 100 other types, you may still develop gout. Although you might not be able to tell whether the joint pain and swelling you experience is caused by a new case of gout or your existing arthritis, your doctor can by doing a blood test to measure your uric acid levels and by examining your joints. To read about one man's quest to find out the cause of the pain in his feet and knees, go to www.arthritis.org/arthritistoday/oncall/archives/qa/oncall-gout.asp. And if you have any questions about gout, feel free to e-mail them to me directly at www.arthritis.org. I'll try to get them answered as we prepare for the second annual National Gout Awareness Day in 2008.

So Far, So Good... part 2

2007-05-21T12:14:00.001-04:00

Well, what do you know? The combo of a good-for-you, high-fiber cereal, blueberries and organic skim milk really does make my blood sugar spike! My nutritionist needs my readings on Monday mornings; here is what I sent her earlier today – a record of the last few days of my life:

5/17/07: walked at 7:15 am and 2:20 pm
FBG = 97
2-hour post breakfast = 116
2-hour post lunch = 96
2-hour post dinner = sorry, didn’t have dinner til 9 and fell asleep at 10:30.

5/18/07: walked at 7:00 am and 3:20 pm
FBG = 112
2-hour post breakfast = 109
2-hour post lunch = 161! (had lunch at son’s gifted program presentation/party — ate very light there, since choices weren’t great and then had bowl of really healthy cereal with organic skim milk at home)
2-hour post dinner = 122

5/19/07: Shopping, housecleaning and laundry were activities during day; dinner and play with my mom at night
FBG = 94
2-hour post breakfast = sorry, forgot — I was out shopping/running errands
2-hour post lunch = 119 (had turkey, 1 slice cheese, lettuce and light mayo in a no-carb wrap along with 1 cup of leftover ravioli)
2-hour post dinner = 130 (had brown rice, chicken and veggie stir-fry with unsweetened iced green tea -- something in the soy sauce?)

5/20/07: walked in pool 30 minutes, walked at night 25 minutes
FBG = 92
2-hour post breakfast = 102
2-hour post lunch = 146 (had cereal with blueberries and organic skim milk)
2-hour post dinner = 150 (had hot dog, pasta/veggie salad made with whole wheat pasta and no-carb Italian salad dressing, 1-cup mix of red grapes/cherries and orange slices, 1/2 cup sugar-free ice cream)

5/21/07:
FBG = 91
2-hour post breakfast = 157! (had 2 eggs, half slice of cheese on whole wheat English muffin and no more than 2 ounces of OJ)

I’m feeling fine and committed to doing this — I’m just totally surprised that small amount of OJ or the cereal/fruit/milk combo, which seems so healthy, would have such an effect. Wow!

I have to say, though, that really watching everything I eat and making sure I get a good amount of activity has me feeling much better. I think the inflammation has gone down somewhat – my hands and ankles are less puffy, my fingers less stiff and my wrists less sore – and I am definitely less tired than last week. I was having trouble keeping my eyes open while driving to or from work before I started monitoring my blood glucose levels. If they were too high, that would explain the fatigue. So, now, did my fatigue and inflammation come from only the gestational diabetes, meaning that my RA really is better during pregnancy? Or is it a combination of both? I don't think there's any way to tell for sure, but I'm sticking with what's working!

So Far, So Good... part 1

2007-05-17T15:06:00.000-04:00

I know it's been only one day, but I have lived strictly by the rules today, and my blood glucose levels have been right on target. I feel good, so I want to share what I've done, in case you want to try it, too:

6:45 a.m. -- Fasting blood glucose of 97 (80 to 95 is normal, so just a tick or two too high); had big glass of water
7:10 a.m. -- Walked 1.5 miles in 25 minutes – not fast, considering I'm waddling right now at 7 months pregnant, but it's not too slow to be ineffective, either.
8:15 a.m -- Breakfast: 2 scrambled eggs, 1 piece cheese and 1 piece whole wheat toast
Tea (no sugar) in car on way to work; finished at desk
10:30 a.m. -- 2-hour post-breakfast glucose level of 116 (should be less than 120, so off to a good start)
12:30 p.m. -- Lunch: leftover chicken breast, brown rice and peas from last night's dinner; 4 ounces unsweetened applesauce and a 4-ounce yogurt; more tea (unsweetened green with chamomile)
2:20 p.m. -- Walked 6 city blocks in 20 minutes (again, not high intensity, but not strolling either)
2:40 p.m. -- 2-hour post-lunch glucose level of 96 (well under 120!)
3:15 p.m. -- enjoying my apple and peanut butter along with water while I'm working.

Doing well! More later...

Inflammation is Taking Over

2007-05-16T14:42:00.000-04:00

I had an interesting lunch-time appointment with a nutritionist today. Beyond the obvious cruelty in meeting with a nutritionist when you're hungry, I was concerned to find out that along with having to deal with RA and autoimmune thyroid disease while pregnant, I now have gestational diabetes, too. I never had that with any of my three other pregnancies, but both my parents have diabetes, and next week I turn 41 – my risk of developing diabetes is going up, so I'm not totally surprised. What did surprise me was how quickly I went from normal checks for sugar to failing the one-hour and then three-hour glucose tests.

The root of it all? Inflammation. Over the past few weeks, my sed rate and CRP level have gone up. Now that I'm off sulfasalazine for the RA, the inflammation is increasing. I've been reading for quite some time about the connections between inflammation and diabetes, and I'm currently working on an article about it. How ironic.

So how to go about resolving the problems? Fix the timing of when I eat, and of course, eat less, move more and try to relax. Overall, I already eat the way the nutritionist recommends. I don't drink fruit juice or sodas very often – certainly not every day, sometimes not even weekly. And my family doesn't have a dessert-every-night-after-dinner habit, so no problem there. My favorite snack? Apple slices and peanut butter – one she recommended. My usual lunch? Dinner leftovers (so meat and veggies) or soup and a sandwich – both on the list. But this one surprised me: My usual breakfast of high-fiber cereal, fruit and organic skim milk is better eaten in the middle of the day. Who knew?

Apparently the hormones generated by the placenta during pregnancy cause insulin to spike both in the morning and at night (and I do admit to the ocassional bowl of cereal before bed). So, for breakfast she recommended scrambled egg and whole wheat toast. I can do that, although one of our upcoming nutrition articles points out that eggs might not be the best choice for people with diabetes. (Find out why in the Sept-Oct issue). I'll try alternating eggs with organic, whole-grain, steel-cut oatmeal and see which affects my glucose level more. I'll now be testing my blood glucose four times a day and reporting my results weekly to the perinatologist.

Beyond that, I'll continue walking – maybe go for two walks a day. The pools are open here now, so I'm back to walking in the water and doing laps, which I love. My oldest son goes with me to the gym ocassionally, and we do the cardio and weight machines together (usually while laughing, which is good for reducing inflammation, too). School's out next week and baseball season winds down in early June, so we can do that more often. I'm still taking a few flights of stairs at work and elsewhere this far along in the pregnancy (beginning of third trimester) so staying active won't be a problem. Finding time to relax, though? Hmm. Does collapsing into bed at night after a jam-packed busy day count?

I've got to do it all, though. For myself, for the little girl I'm carrying and for all of you – to prove that it is possible to take control of the inflammation that can affect every system in our bodies.

I'll be continuing to work on the inflammation and diabetes article for the next few weeks. Post a comment here if you also deal with both conditions and let me know what works for you. If you'd like me to consider including a comment from you in the upcoming article, e-mail me directly at dsiegfried@arthritis.org.

Take care!

It's Official: No FDA approval for Arcoxia

2007-04-29T21:53:00.000-04:00

As suspected, the FDA declined to approve the COX-2 drug etoricoxib (Arcoxia) – Merck's follow-up to the COX-2 Vioxx, which they pulled from the market in 2004. Arcoxia data was reviewed by the FDA's Arthritis Advisory Committee several weeks ago, but the committee voted 20 to 1 against recommending its approval. Although the FDA does not have to follow the recommendations of the advisory committee, it usually does.

Although the official "nay" to approval is not surprising, it leaves the one remaining COX-2 on the market – Celebrex – as the only option in that class of nonsteroidal anti-inflammatory drugs (NSAIDs). Some people with arthritis found the two defunct COX-2 drugs, Vioxx and Bextra, to work better for them than Celebrex, and were looking forward to a potential new option that might provide pain relief while sparing the gastrointestinal irritation and side effects of traditional NSAIDs. Others, both patients and doctors, have been concerned about the safety of not only the COX-2s, but all NSAIDs, since more has been learned about the risks in the past three years.

Is it better to have a pain relief option that may increase your risk of a cardiovascular side effect, if being more functional will help you be active enough to reduce your cardiovascular risks through exercise? And if you could exercise more, would you? Or would you rather not take the risk of affecting your heart? Why or why not?

I'm working on an article right now about this entire issue, which includes comments from you, readers who answered Arthritis Today's latest online poll, as well as doctors on both sides of the issue. Look for the finished version in the July-August issue. In the meantime, it's not too late to voice your opinion on the subject. Leave a comment to this post and share your thoughts. If you're OK with me including your comment in the published version of the article, just say so. (Be sure to include your name, city/State, age and arthritis condition; don't worry, I'll delete all that information before I post your comment.)

Donna Siegfried

Beyond the Headlines, Again

2007-04-27T11:59:00.000-04:00

Yesterday the Arthritis Today editors attended the annual conference of the Magazine Association of the Southeast (MAGS). After we spent a full day learning mostly about how to make our Web site better and more interactive, we spent a nice evening at the awards banquet and were thrilled to have received several awards. The Supplement Guide we published in the Sept-Oct 2006 issue won the gold award for Best Design, the magazine overall won a bronze award for General Excellence and we won a gold award in the Best Service Journalism category for an article that appeared in our July-August 2006 issue, called "Beyond the Headlines."

If you subscribe to the magazine, you might remember it. The article opened with a skeptical-looking man reading a newspaper (note the made-up headlines and article!) and addressed the flip-flops that broke in the news at that time. Incidentally, "that time," was two weeks before we went to production. This was an article that we felt we had to do and we had to do immediately. It absolutely had to go into the next issue, even if it meant long nights pulling together and analyzing the research on studies that were released then – ones that said calcium and vitamin D weren't as beneficial for bones as previously thought, that low-fat diets don't reduce risks of cancer or heart disease, and that glucosamine/chondroitin aren't really effective. We highlighted what most news reports said, gave you insight into reactions that followed the news and then told you the whole story, pointing out what other media failed to mention. Our contributing editor Denise Mann did a great job writing to our vision, and AT's editor-in-chief, Marcy O'Koon, gave me great input on my edited version to make it work even better. We really won the Gold Award last night for a great group effort.

It's ironic that this article won an award last night, considering that chondroitin is back in the news. Reports now say that chondroitin – on its own, anyway, and in three out of 22 studies – just isn't effective. However, consumers are buying more of it and saying it works for them. The bottom line is that the supplement isn't harmful, so most doctors are neither recommending its use or discontinuation. But here we are addressing this issue once again, as we'll continue to do. After all, once an article is published, that's not the end of it for us here. There is indeed far more beyond the headlines. Keep reading.

Tomorrow's a Big Day

2007-04-11T16:58:00.000-04:00

Shhh. Hear that buzzing sound? It's people discussing what may happen tomorrow at the FDA's Arthritis Advisory Committee meeting. There, experts will be debating whether another COX-2 drug, etoricoxib (Arcoxia), will likely be recommended for approval. Arcoxia is a successor to the now-defunct Vioxx in that it's another COX-2 manufactured by Merck. Safety of patients versus the need for treatment options for patients likely will be the hot topic. I'll be watching and listening as the news unfolds, but I'm curious in what you think the outcome will be. No water-cooler bets have been placed around here, as far as I know, but go ahead and take a guess. Let me know if you think the FDA committee will recommend it be approved or sends it back to the drawing board -- why or why not? And be sure to let me know what you wish/hope will happen tomorrow and in the future.

Donna

Dolphin Therapy

2007-04-08T17:22:00.000-04:00

I just returned from a great Spring Break week on Hilton Head Island, in South Carolina. The weather was gorgeous for most of the week – 80-degree sunny days until the cold snap Friday night, and only one quick thunderstorm. Although it's always wonderful to simply hang out with my family, play in the sand with my kids, go for bike rides and take life more slowly, work is never completely out of my mind. I can't help it. My work compels me to always have my antenna up for the latest news, promising research or personal story.

While I'm walking on the beach, I'm observing some of you struggling with a bad knee as you cross the shifting, dry sand or perservering through pain while you make sure you get in that walk on the beach. Last week I was quite impressed by an 80-some-year-old man who was obviously severely affected with osteoporosis out on the beach every day for a walk. He could barely look up to see where he was walking, yet he walked. Sure, he walked slowly. But he walked. He kept at it. He didn't say, "I can't; it hurts." He must have said, "I'm going to keep walking so I can CONTINUE walking." Knowing what people who have osteoporosis go through, I was so proud of him.

As I relaxed in my beach chair or sat with my family at a great seafood restaurant, I overheard some of you talking about hip replacements, supplements, medications or the benefits of the omega-3s in your salmon. Sometimes – usually when I'm not with my entire family – I join in the conversations. Once in a while I'll explain why I'm so interested. I'll 'fess up to being the medical editor of Arthritis Today, or I'll simply say I'm a patient, too, while hoping that you'll tell me you got your information from our magazine. But mostly I just listen – and think. I think of article ideas, and I think of what it must be like to be in your shoes, rather than my sandals. I think about questions for researchers and doctors, and I think about what answers they might give you – and what else you may still wonder.

During the night of the quick thunderstorm, my family and I watched a television show about dolphins. I have always loved dolphins, which is one reason we enjoy Hilton Head so much. There hasn't been one visit to Hilton Head in which I haven't seen dolphins. If I could be an animal, I'd choose to be a dolphin – they're intelligent, they get to swim and play all day, they're great communicators and they're loved. According to the show I watched, they may help people with chronic conditions, too. Although I've been a fan of dolphins all my life, I had never heard of dolphin therapy. Rest assured I'll be checking into it, though. Apparently swimming with dolphins provides relief to those in chronic pain or depression. The experts theorized the sounds emitted by the dolphins could increase the production of endorphins in humans. Or maybe swimming with dolphins is so utterly peaceful, you can't help but feel better when you're around them.

The morning after that program aired, I was watching my husband out in the ocean with my kids when all of a sudden a dolphin dove not 30 feet in front of them. I immediately headed for the water, hoping I'd get there quickly enough to have the chance of seeing one up close. The kids were encouraging it to come back and hoping it would come close enough so they could touch it – and they weren't the only ones. It seemed that everyone on the beach was drawn to the water when that dolphin came so close to shore. People headed toward the water in droves, pointing and smiling – including the 80-some-year-old man with osteoporosis who was out for his walk. I doubt pain relief was on anyone's mind at that moment, but I have no doubt we all felt happy, peaceful and better. Free dolphin therapy for all.

Everyone on the beach that morning was enjoying the beautiful dolphins, and I was enjoying watching everyone do so – and thinking about what you Arthritis Today readers would be wondering. Watch the pages of the magazine to see what I find.

Redirecting...

2007-03-16T10:33:00.000-04:00

Every time I log on to create a new post, I get a message that says "Redirecting" before I'm connected to this blog. It gives me a few extra seconds to think about what exactly I'm going to write. Today, I'm not so sure. Every morning I get a newsletter from mediabistro.com, which is all about the magazine and media business. It contains the latest "news" on who's leaving this publication or station and who's starting at that publication or station, which publication or show is doing well and which is tanking. They also help keep up your skills through their online seminars or offline classes. Today, along with news that a man who killed three people in Greenwich Village in New York City yesterday used to be a Wall Street Journal reporter and editor, was an online article about blogging that caught my attention.

Did you know blogging is getting to be so popular that two are created each second? Blogging is huge! Advice in the article included trying to position blogs like the popular entertainment blogs. I took a look at some of them, and I don't think you'd all be interested in what books I'm reading now, what music I'm listening to, my commentary on last night's episode of "Lost" or the celebrities I've seen recently. (Although, a few days ago I saw comedian Jeff Foxworthy at my local grocery store buying cat food and Doritos, maybe planning to sit down with a snack and watch his new show on TV. And I saw Mets pitcher Tom Glavine at the opening day of the local youth baseball park two Saturdays ago. His two boys looked adorable in their own little Mets uniforms, as Tom bought them pizza at the concession stand after their first games of the season.)

I admit, the thought never crossed my mind to snap their pictures with my cell phone and plaster them on my blog. So maybe I'm not a true blogger? Maybe I'm just a writer. Is that so bad? I'm questioning blogging because we're all questioning blogging. Our aim was to bring up topics of discussion, mention new studies and create a community among people with arthritis. We've done that somewhat, but are we doing enough? Another tip in the article I read is that bloggers should add new posts three times a week. I'll give that a shot, but I'm still not promising candid celebrity shots or gab about TV shows (unless the FOX medical drama "House" has yet another patient with an arthritis-related condition!)

In the meantime, please let me know if you've read this. I'm curious. You don't have to post a comment, unless you want to. I just want to know how many people are reading it. I know you're out there. I know that 115 of you have read the blog and then subscribed to Arthritis Today -- that's awesome! But I want to give all of you what you want. If you have a minute, I'd love to know what you DO want out of this blog. Do you want a daily newsfeed about arthritis studies? Do you want tips on just taking care of yourself -- how to eat right, an exercise move to try, a handy new gadget that might make life easier, a way to ease stress? Let me know, because another bit of information I learned today is that this blog could become a mobblog; that is, a blog where several people have input and can add new posts. We can alter the blog, if you want, but then how will it be distinct from the Arthritis Today Web site (take a look there at www.arthritis.org/arthritistoday.

Blogs are new to everyone. Let's make this one what works best for all of you who are reading it and have fun doing it!

Take care,
Donna

Advocating is Working!

2007-03-06T10:34:00.000-05:00

This year's advocates have been working hard, and their efforts are paying off. The Arthritis Prevention, Control and Cure Act that I mention in my previous blog post officially has been introduced in the House of Representatives! A total of 57 representatives were original cosponsors. Check out the list of them below. If your state representative is not included, please contact them and urge them to become a sponsor. This is an important act that will help improve the lives of many people with arthritis. Head to www.arthritis.org/advocacy to learn who your representatives are, learn how to contact them and find out what to say. Your help is deeply appreciated.

Rep Allen, Thomas H. [ME-1]
Rep Bartlett, Roscoe G. [MD-6]
Rep Boyda, Nancy E. [KS-2]
Rep Burton, Dan [IN-5]
Rep Butterfield, G. K. [NC-1]
Rep Capps, Lois [CA-23]
Rep Carney, Christopher P. [PA-10]
Rep Clarke, Yvette D. [NY-11]
Rep Conyers, John, Jr. [MI-14]
Rep Cuellar, Henry [TX-28]
Rep Cummings, Elijah E. [MD-7]
Rep Davis, Lincoln [TN-4]
Rep Davis, Tom [VA-11]
Rep Delahunt, William D. [MA-10]
Rep Doyle, Michael F. [PA-14]
Rep Farr, Sam [CA-17]
Rep Frank, Barney [MA-4]
Rep Gerlach, Jim [PA-6]
Rep Gordon, Bart [TN-6]
Rep Graves, Sam [MO-6]
Rep Holt, Rush D. [NJ-12]
Rep Jackson-Lee, Sheila [TX-18]
Rep Kennedy, Patrick J. [RI-1]
Rep Kucinich, Dennis J. [OH-10]
Rep Langevin, James R. [RI-2]
Rep Lantos, Tom [CA-12]
Rep Lewis, John [GA-5]
Rep LoBiondo, Frank A. [NJ-2]
Rep Lowey, Nita M. [NY-18]
Rep Maloney, Carolyn B. [NY-14]
Rep Matheson, Jim [UT-2]
Rep McDermott, Jim [WA-7]
Rep McGovern, James P. [MA-3]
Rep McHugh, John M. [NY-23]
Rep McNulty, Michael R. [NY-21]
Rep Miller, George [CA-7]
Rep Moore, Dennis [KS-3]
Rep Pickering, Charles W. "Chip" [MS-3]
Rep Platts, Todd [PA-19]
Rep Todd Russell [PA-19]
Rep Ramstad, Jim [MN-3]
Rep Rangel, Charles B. [NY-15]
Rep Reyes, Silvestre [TX-16]
Rep Ross, Mike [AR-4]
Rep Schakowsky, Janice D. [IL-9]
Rep Schiff, Adam B. [CA-29]
Rep Schmidt, Jean [OH-2]
Rep Schwartz, Allyson Y. [PA-13]
Rep Serrano, Jose E. [NY-16]
Rep Sessions, Pete [TX-32]
Rep Tauscher, Ellen O. [CA-10]
Rep Tierney, John F. [MA-6]
Rep Towns, Edolphus [NY-10]
Rep Van Hollen, Chris [MD-8]
Rep Watson, Diane E. [CA-33]
Rep Waxman, Henry A. [CA-30]
Rep Wolf, Frank R. [VA-10]
Rep Wu, David [OR-1] - 3/1/2007

Time to Advocate!

2007-02-27T09:46:00.000-05:00

Today (Feb 27) and tomorrow (Feb 28), hundreds of people with arthritis will be visiting Capitol Hill to urge their Senators and Representatives to become cosponsors of the Arthritis Prevention Control and Cure Act. These advocates are serious. They open up to their members of Congress, sharing their personal stories of what life is like with arthritis and how Congress members can help improve the situation for the millions of other people who have some form of the disease.

Two years ago, I was one of the advocates who climbed the steps and walked the halls to share information and stories of people with arthritis with elected officials in the Senate and House of Representatives. Some of the stories I shared came from the stories that readers of Arthritis Today told me. The impact was strong, and many members of the last Congress signed on as cosponsors, meaning they would help form the two-thirds majority needed to get the Bill containing the Act through the process of becoming passed. Unfortunately, the number of cosponsors in the last Congress didn't quite reach the two-thirds majority, so with the new Congress in place, we must start again. Yesterday the Virtual Summit began. If you want to urge your Senators and Representatives to cosponsor the Act, so that funding for arthritis research and medical care for those with various forms of arthritis can increase, click on the link to the Arthritis Foundation to the right of this box, and when you get there, click on the Advocacy tab.

This year, I sent my story to my congressional representatives via the Virtual Summit. Why? Because it's a bit different than the one I had two years ago. I hope my story gets through to my elected officials. I've pasted it here to share it with you, too:

Two years ago, I visited several Senators and Representatives on Capitol Hill to share stories of people living and trying to survive with the chronic disease rheumatoid arthritis. This year, I am one of them, having been diagnosed with rheumatoid arthritis a few months ago. Two years ago, I visited your office, Dr. Price, to inform your staff about the seriousness of arthritis with hopes that you would support the Act. I am extremely disappointed that you have not yet done so. And that same year I interviewed you, Senator Isakson, to share your reasons for supporting the Act (thank you) with the readers of Arthritis Today magazine. I believe you were presented with a plaque containing the article that may be hanging in your office right now. Back then, I was advocating for people with arthritis for two reasons. The first reason was personal – my grandmother died of rheumatoid arthritis when I was 18 months old and I've seen my daughter unable to walk when she was four years old due to arthritis triggered by a virus. The second reason was professional. I am the medical editor of Arthritis Today magazine, which is published by the Arthritis Foundation. Every day of my life I talk to or read about people who struggle to pay for their highly effective but highly expensive treatments so they can stay productive in their jobs and continue to be active members of society. And every day I talk to or read about people who cannot afford to do so, and therefore have (or feel they will) become a burden on society by being one of the disabled. I hear about the pain they must bear with every move they make, and I see how they try to adapt and modify tasks so they can continue to use their gnarled hands and fingers.

But now, I live with the pain, too. I still work full time, I am able to care for my three children, I am successfully pregnant with my fourth child and I know to take good care of myself to help reduce or stall future disability. But rheumatoid arthritis is unpredictable and can be extremely aggressive. Who's to say in 10 years I won't have damaged joints that reduce my ability to work or care for my kids? Who's to say that once I deliver the child I am carrying, my condition won't change drastically, as it can, and leave me unable to hold my new baby? Who's to say that because I have rheumatoid arthritis I won't develop cancer, as can happen, and require more of the country's economic health care dollars. A new study, now appearing in the March 2007 issue of the journal Arthritis & Rheumatism, shows that people with inflammatory arthritis, such as rheumatoid arthritis, have at least twice the risk of death from disease than the general population.

I am sure you've heard the latest number on the impact of arthritis on the economy: 128 billion dollars! And most likely that amount will continue to rise unless some money in the budget is directed toward research that will help create treatments to keep more people working and fewer people from becoming disabled.

This year, I still advocate for those same reasons, but this year I implore you to support the Act for an additional reason: To help increase the number of rheumatologists in this country. Now that I am a patient of a rheumatologist, I experience first hand the extraordinary wait times for appointments. I've spent six hours in a waiting room myself during an appointment and I've waited weeks for phone or e-mail response from my excellent but seriously overworked/overbooked doctor. I have also written an article for Arthritis Today magazine about the increasing shortage of rheumatologists. I sat at the American College of Rheumatology meeting when results of a study of the situation were unveiled and heard a well-known Penn economist describing how health care doesn't just take a huge bite out of the economy but how it IS the economy.

It is astounding to me how few doctors we'll have to care for people in the future, especially rheumatologists, when arthritis is now the number one cause of disability in this country and carries such a huge economic impact. It also is astounding to me how the shortage of rheumatologists will grow right along with the age of the general population. As the number of senior citizens increases over the next decade or so, the number of doctors available to diagnose and treat conditions associated with aging, such as osteoarthritis, is decreasing. It just doesn't make sense. You can help solve these problems by supporting the Arthritis Prevention Control and Cure Act. The provisions in that Act state that money will go toward research and to help ease the financial burden on doctors coming out of a residency who may choose a higher-paying subspecialty over the low-paying rheumatology subspecialty. Medical reimbursements for rheumatologists are so low that some doctors who have the desire to become a rheumatologist end up choosing another subspecialty so they aren't thrust into debt for years. Helping them through rheumatology training will ensure more rheumatologists in the future -- when we will need them dearly.

It's wonderful that science is getting closer to figuring out what goes wrong in the body to cause autoimmune diseases, such as rheumatoid arthritis, or how inflammation affects not only rheumatoid arthritis but possibly also plays a role in osteoarthritis. It's also wonderful that pharmaceutical companies and orthopaedic specialists are making progress in creating treatments for these conditions. However, as one prominent rheumatologist from the Hospital for Special Surgery in New York City said, "If we can't get the medications to the people who need them [due to a lack of rheumatologists in the U.S.] then shame on us."

Shame on us, indeed, and shame on you if you do not see how arthritis is every bit as important as the other chronic diseases in this country and support the Arthritis Prevention Control and Cure Act. Please say you will. I will do everything I can to preserve my health and reduce the amount of health care I personally consume. I hope you will do everything you can to help the growing number of people in this country who are being diagnosed with some form of arthritis to get the care they need, get the treatments they need and get the information they need to take care of themselves, too.

Thank you for your time.

Wow!

2007-02-16T09:42:00.000-05:00

I can't believe it's been two months already since the last post. The holidays were a whirlwind, as usual, for all of us here at Arthritis Today, and for the past 4 to 6 weeks, we've been pretty darn busy here, not only getting new issues of the magazine ready, but also getting our new Web site up and running. Now you can access us through the Arthritis Foundation home page, or you can go right to www.arthritis.org/ArthritisToday. There, we give you bonus information that ties into topics in the magazine's current issue, and you'll be able to find favorite articles and advice from past issues. Over time, the Arthritis Today's home page will build nicely and provide even more services. It went live yesterday, so now.... back to blogging!

You might notice that we've changed the title of the blog from "Arthritis Today's Hot News" to "Arthritis Today's Hot Topics." The reason for the change is that you readers often send in questions that, indeed, become hot topics of discussion among the staff and extended family of Arthritis Today. But what's on your mind and ours isn't always what makes the headlines on the evening news. We dive into the deep end of the news current and come up with questions and other connections to explore. We'll explore some of those topics here, some in the magazine and some on the Web site. Check out all three places to stay as informed as possible. And keep your questions coming! (E-mail them to atmail@arthritis.org or send them to Arthritis Today, 1330 W. Peachtree St. NW, Suite 100, Atlanta, GA 30309.)

One topic that has been on my mind lately is pregnancy and inflammatory arthritis. Over those whirlwind holidays, I discovered I was pregnant with our fourth child – 8 years after our current youngest was born! I'm now 40, will be 41 when the baby is born in August, and am not yet through my first year since being diagnosed with RA. I was shocked, my husband was shocked and my rheumatologist was shocked. I had started on sulfasalazine back in September and was feeling great and could tell some inflammation had subsided by November. Ironically, that's when I got pregnant. Perhaps getting my arthritis under control got all my body's systems back to normal, making it conceivable to conceive.

Now that I have conceived, my rheumatologist has told me to stay off the sulfasalazine during the pregnancy, and that we can explore other treatment options, if I need help during the next several months. But so far, so good. Overall, I feel really good and really healthy. At times I can feel the pulling sensation and soreness in my wrists, hands, ankles or feet. But once I rest a little, I'm fine. I'm maintaining my exercise – walking, using the elliptical machine or ramp machine at the gym and lifting weights twice a week – and I'll add in swimming soon (once I need some relief from gravity on my growing belly!). Of course, I'm eating as healthy as possible, and that always makes me feel better.

I've gone through some extra testing, now that I am of "advanced maternal age," but I've had good news. Even with having RA and autoimmune thyroid disease, the tests show I have no more risk of having a baby with Down's syndrome or Turner's syndrome than a 20-year-old woman. The blood tests and ultrasound show a healthy, developing, active baby, for which I am grateful. I know many women with lupus and RA have had miscarriages – I had one years ago, myself – and the perinatologist I saw recommends my rheumatologists tests me for antibodies that could trigger one this time around. I am not worrying, but I admit I sometimes do feel the weight of all the information that needs to be sorted through during a pregnancy. One question I have is this: If I'm off the sulfasalazine for all these months, and the inflammation ramps up again, what effect will that inflammation have on the growing baby or my health during the pregnancy? Will I have an increased risk of pre-eclampsia or stroke?

I'm not the only one with questions, either. Last summer, when I was at the American Juvenile Arthritis Organization's annual conference here in Atlanta, I sat in on a lecture being given to young women who were planning or considering pregnancy. The amount of information given by the doctor who was speaking was astounding, and the room full of young women furiously took notes and asked questions for a good hour or so. There was a mother and daughter sitting right in front of me, and the mom leaned over to the daughter and whispered, "We have to get a calendar to keep track of when we have to do everything." That sparked an idea within me that I'd like to make a reality. I see a real need for young people with arthritis to have more information about what they need to do before, during and after a pregnancy to ensure their health and the health of their baby. While I'm developing this idea, please send me any questions you may have regarding handling pregnancy along with inflammation – whether for yourself or for someone you know. You can post a comment here that I'll see, or you can send your questions to the addresses I gave a few lines up.

Let's discuss this hot topic and find some answers. And if you have other topics you want to discuss here, just let me know.

Take care,
Donna Siegfried

New Answers, More Questions

2006-12-15T12:09:00.000-05:00

Back around 1990, a change was taking place. For years prior, much of the health advice given to women came from data primarily learned by studying men. Doctors started to wonder whether they were giving the best advice to women, or whether their female patients would be better served by different treatments. To learn more, large-scale studies focusing on health issues in women started getting underway. The Women's Health Initiative was one. We covered some results from that study in a recent feature article in Arthritis Today, called "Beyond the Headlines" (July-August, 2006).

Now results of another large-scale study of women –– The Women's Health Study (WHS) –– have been released. Started in 1992, the WHS began to look at heart disease in women. Doctors knew that heart disease increased in women after they went through menopause and they had recently learned from a large study of male doctors (the Physicians' Health Study) that taking aspirin could reduce the risks of heart disease. But would aspirin therapy work for women? Would another treatment, such as taking vitamin E, be better? Doctors wanted to know, and they recruited nearly 40,000 women aged 45 or older to find out. The study was supposed to be 15 years long, ending in 2007. It's been extended through 2009, however, as they continue to look at genetic material gathered from the women's blood samples (the women had blood samples taken regularly throughout the years of the study) so they can learn how to better predict risk for major health conditions.

I tell you all that to tell you this: Rheumatoid arthritis (RA) is one of the health conditions they evaluated. Like the Women's Health Initiative, some of the results may raise more questions. As part of the WHS, rheumatologists from Brigham and Women's Hospital/Harvard Medical School in Boston looked at blood samples from 398 women from the study who reported having been diagnosed with RA about 10 years ago. Of those 398, the rheumatologists confirmed RA in 90 of the women. (Does that mean more than 300 women are being treated for RA that they don't really have??!!)

The rheumatologists then studied those 90 women, to see if their levels of C-reactive protein (CRP) could have predicted their RA. CRP is a chemical produced by the body when inflammation is occurring somewhere in the body. It's known to be an indicator of disease activity in RA. Doctors wanted to know if CRP levels were high in the women with RA prior to their being diagnosed with the disease. If the CRP levels were high, it could mean that a simple blood test might be able to indicate which women are more likely to develop RA later in life.

But alas, it did not. The doctors found that the women's previous CRP levels were not associated with their incidence of developing RA. Even around the time the women were diagnosed with RA, their CRP levels were not predictive. CRP may be a good measure of how severe your RA may be -- that is, the higher your CRP level, the more pain and stiffness you may feel -- but apparently it's not a great predictor for whether you'll develop the condition. The search for a simple way to predict RA continues.

I wonder this, however, both as an editor and a patient: If you have a high CRP level for months before you are diagnosed, does that mean something other than RA is causing your chronic inflammation? Or does it mean that the RA diagnosis came too late? Either way, how can you be sure you are on the right treatment now?

Is there a doctor in the blog?? If so, your insight is welcomed!

No Excuses

2006-12-05T14:15:00.000-05:00

We did it! Arthritis Today's Fitness and Nutrition editor, Kenna Simmons, and I came up with a way to work in some exercise – and we didn't back down! Last week, Kenna read a study showing that in overweight, sedentary women aged 50 to 75, those who exercised at a moderate intensity for at least half an hour every morning fell asleep easier at night than those who exercised less. Women who exercised in the evenings had little or no improvement in the ability to fall asleep or the quality of their sleep. Kenna's e-mail to me said, "Clearly I have to get my lazy butt up and walk in the a.m., but I am NOT a morning person." Well, Kenna's not what you would call lazy, and she's quite pleasant in the mornings – so pleasant that we often chat for a few minutes before we dig into our days. I suggested that since we usually chat in the mornings anyway, we could go for a walk while we talk. She said it was worth a try because "something is just psychologically easier about thinking, 'I have to get to work earlier' versus 'I have to get up early to exercise!'"

So, we set today as our morning to start shooting the breeze while getting some fresh air, and wouldn't you know it -- this was the coldest morning of the year here so far. We had a breeze, that's for sure, and a quite chilly 20-something temperature. If ever there was a morning to stay under the covers, this was it! (I know, the 20s aren't so bad, but my Pennsylvania tolerance to cold has disappeared now that I've lived in Atlanta for 6 years!)

But, Kenna in her earmuffs, and I in my scarf and gloves, didn't let each other down. We met here early and walked about 5,000 steps before settling down to our computers. It felt good and cleared our heads, and now that we've done it on such a chilly morning, we have no reason to back down in the future. We'll see if we sleep better tonight. The well-placed Starbucks at the end of our walk provided us with some handwarmers (nonfat, mind you!) that hopefully won't interfere with the Z's.

Let us know how you've overcome an exercise hurdle by altering a portion of your day to fit in some activity!

Busy Week!

2006-12-01T16:42:00.000-05:00

We're busy beavers here at Arthritis Today. Our January-February 2007 issue, which contains our annual Drug Guide, just went to the printer. Now we're working hard on articles for our March-April issue. The Arthritis Walk ramps up in March – teams form and funds get raised. Our March-April issue will help you prepare to "walk The Walk."

In March, our Arthritis Walk team will have a new member. The staff of Arthritis Today just grew. We're happy to have Anne Garry join us as managing editor. She's not only getting herself situated here at AT, but also getting established as a new resident of Atlanta. She got here while Atlanta was in a warm spell and her former home of Chicago was getting chilly, though, so she's off to a good start.

Tomorrow morning, I'll be speaking with Chad Deal, MD, a rheumatologist at the Cleveland Clinic who headed up the ACR Workforce Study. I'm thrilled to have a chance to speak one-on-one with him about how rheumatologists plan to care for an expected influx of patients in the coming decades. You'll read about it all in our March-April issue. I'm sure I'll be mulling over what he says while I'm sitting in the waiting room at my rheumatologist's office on Monday morning!

We all struggle

2006-11-20T13:55:00.000-05:00

From Beth Axtell, research communications specialist for the Arthritis Foundation:

I liked your blog entry – here’s a response from me:

Like you, I have been struggling with changing my lifestyle. Actually, I succeeded in changing my lifestyle, but I’ve been slipping back into old habits lately. I know exactly what I should eat, I know exactly what kind of exercise program works best for me. I know what I need to do to feel good. But, life throws curveballs and there are decisions to make about priorities.

Spend an hour after work helping my daughter with her homework or go to the gym for an hour? Who’s more important my daughter or me? Spend Sunday afternoon baking cookies with the kids – a wholesome family activity – but one that results in cookies being available for consumption (a temptation I am not able to forego). Have date night with my husband (which usually involves dinner and a glass or two of wine) or skip date night because I shouldn’t have the rich food and alcohol. Play pirates with my son or do the laundry, or scrub the toilet, or go grocery shopping, or go for a run, or make a healthy dinner – or forget it all and load the family in the car and go out for pizza and ice cream.

I know, I know. There are compromises I could make. I could help my daughter with her homework then go to the gym after she goes to bed at night. Rather than baking cookies with the kids we could prepare a salad together (that’s likely to happen!). Spend time with your husband at the bookstore rather than out at dinner. Sometimes it all just gets to be too much work.

Some days I wonder if it would be better to ease the burden off of myself and live my life a little more fully. On my deathbed, will I regret that I was a size 12 rather than a 6? Maybe it’s better to have a glass of wine in the evening or a few cookies with the kids – enjoy my life rather than being ferociously dedicated to my health regimen. Will it make it worth it if my health program – with its quadriceps strengthening exercises, fat-battling cardio and joint-aligning foot orthotics – prevents me from developing painful OA or diabetes or heart disease? Where is the balance? Can someone tell me exactly what weight I need to be or exactly how often I need to exercise or just how many cookies I’m allowed to eat?

Giving Thanks!

2006-11-20T10:03:00.000-05:00

Well, made it back to Atlanta safely, but my what a storm! The ride was pretty bumpy. My big book of abstracts from the ACR meeting drew some attention from the people seated around me on the plane. I started to hear all about their sore, stiff joints and people they knew who had arthritis. Since one in three people are said to have some form of arthritis, it never surprises me that people have such a familiarity with the diseases. What surprises me is the misinformation they share. One man on the plane was telling me all about the acai berry juice he sells through a network marketing company. He was able to tell me how great business was and how much better he feels after drinking a little bit of the juice twice per day, but he was unable to tell me what the juice reportedly does for the body or what studies show about the ingredient. Other people want to know what can be done for their sore knees, but they bristle when I say weight loss. They're willing to experience side effects from medication or rehabilitation and soreness after surgery but not willing to work through a few hunger pangs as they cut back on calories or initial soreness as they get into an exercise program. Why is changing one's lifestyle so hard? I've surely struggled with it myself, so I don't have any answers either. Have theories? Post a comment. I'd love to develop a discussion around this topic.

It's hard to believe that this week is Thanksgiving already -- wasn't it just summer?? I'm hosting about 16 people at my house on Thursday, and one tradition in the Siegfried home is that before we eat our Thanksgiving dinner, everyone at the table shares what they are most thankful for in their life. We've had guests say "good friends," "good food," and "family," and the kids have given thanks for their warm beds, clothing, friends, toys and pets. But this year, I'm giving thanks for good health. While I was at ACR last week and on the phone with my editor, Marcy O'Koon Moss, she asked how I was managing at the conference this year. Honestly, until she asked, I hadn't thought of how good I felt. In years past, especially last year, walking around the convention center left me totally drained, swollen and in so much pain it hurt to walk. I'd use a brace at night to help my ankle and took pain medication to get through the busy days. But this year, I've started taking sulfasalazine for my RA, and didn't realize that I wasn't swollen, stiff or in pain until Marcy asked. I had much more energy this year, was able to hike all over the convention center during the day and then walk outside at night for exercise. I took the brace along with me this year, but didn't use it. So, I'm giving thanks this year that my health is getting back on track. And now that I can see it's moving in a positive direction, I'm more determined than ever to keep it going that way. And that attitude is making it much less of a struggle to make those necessary lifestyle changes. Maybe I'm on to something here!

Take care.

Back to Atlanta

2006-11-15T10:08:00.000-05:00

I did go to the Great Debate yesterday regarding glucosamine and chondroitin. Let's just say there's still a debate. I'll keep an eye on the followup to the GAIT study and will report back in the pages of Arthritis Today.
I'm heading back to Atlanta now, a bit ealier than planned, because there's some nasty weather on the way. I'm sorry to be missing the last few sessions at ACR this morning, such as one on controversies surrounding Sjogren's syndrome. I'll get in touch with the doctors who are presenting right now and let you all know more soon. Hoping for safe travels!

The Adventures of Beth

2006-11-14T20:26:00.000-05:00

From Beth Axtell, Research Communications Specialist for the Arthritis Foundation:

Good afternoon Donna. I'm back in my hotel room after another full day at the conference!

A study was presented about the identification of a disease severity marker in Ankylosing Spondylitis. Dr. Maksymowych explained that of people with AS, a certain percentage will develop an aggressive form that will lead to severe joint damage and complete fusion of the spine (I wish I had written down the percentage -- guess we'll have to wait for the full study or call the researcher). His team's goal was to find some biomarker in people with AS that will predict which ones will develop aggressive disease and structural damage. If these individuals can be identified, they can be started on biologic response modifiers ASAP, which will reduce the liklihood of damage and disability. They found that matrix metalloproteinase 3 (MMP3) successfully predicts about 2/3 of those individuals who develop aggressive disease. He also told us that the test for MMP3 is readily available and inexpensive ($15 or less). The team's next step is to test the biomarker in people with earlier disease -- those with early symptoms rather than those who have already expressed radiographic damage.

Dr. Leslie Crofford of the University of Kentucky and her colleagues studied the efficacy over time of pregabalin (an anticonvulsant drug also used for pain) in people with fibromyalgia. This study started out with 1,051 people with fibromyalgia who took pregabalin at different dosages over a course of 6 weeks. At the end of the 6 weeks, those participants whose pain was “much” or “very much” improved stayed in the study taking the dosage of pregabalin that they were able to tolerate and gave them relief. At the end of the first 6 weeks (the open-label phase), 663 participants were randomized to either continue on the pregabalin or to be given a placebo (double-blind phase). The research team found that at the end of the 26-week double-blind phase, 68% of the people receiving pregabalin still felt relief from their pain, whereas 39% of the placebo-treated group felt relief.

Dr. Tam of the Chinese University of Hong Kong presented her results of an acupuncture study in people with RA. She pointed out that several studies have shown pain reduction with acupuncture in people with OA, but that people with RA have not been studied. This study had three arms: one group received electrostimulated acpuncture, one group received traditional acupuncture, and the last group received sham acpuncture (in which the needle was placed in the skim, but only to a depth of 2 mm, whereas the other acupuncture groups had the needles placed at a depth of 10-20 mm). The group receiving the traditional acupuncture received statistically significant imporvement in number of swollen joints, number of tender joints, patient's global assessment, and physician's global assessment.

Dr. Megan Clowse talks to reporters

2006-11-14T13:53:00.000-05:00

Dr. Clowse gives details of her study on pregnancy in women with lupus to a room full of reporters.

Dr. Jason Theodosakis

2006-11-14T10:25:00.000-05:00

Dr. Theodosakis speaks about glucosamine.

Lots of interest

2006-11-13T16:46:00.000-05:00

Lecture hall is full for a late afternoon symposium on RA treatments and remission.

A new wrinkle and some reassurance

2006-11-13T14:26:00.000-05:00

I suppose I may have a new wrinkle from my brow being furrowed as I take in all the information here at ACR, but the new wrinkle I refer to in this post's title is using Botox for knee pain. At a press conference today, Dr. Maren Mahowald from the University of Minnesota presented results showing that injections of intra-articular botulinum toxin type A (otherwise known as Botox) into the knee disrupted the pain signals sent through the nervous system just enough to reduce persistent pain in those with severe knee OA. In the 35 patients, daytime pain decreased by 39 percent and nighttime pain decreased by 24 percent. Dr. Mahowald says she expects pain to continue to decrease over the next several months, as they continue to track patients in the study. No adverse effects were seen, and Dr. Mahowald and her group of researchers are now trying to determine how many shots are needed per year. (And she jokingly assured us that it would keep our knees from wrinkling. Dimpling is another issue, however.)

As I was writing the above paragraph, Dr. Eric Matteson from the Mayo Clinic stopped by the press room to review the final pages of Arthritis Today's 2007 Drug Guide, which goes to press this week (look for the finished version in the January-February issue). He and I were discussing the news about naproxen that he just heard presented this morning and that I just heard via the press conference at the National Press Club. The news is good: Nonprescription doses of naproxen (Aleve) have an antiplatelet effect similar to low-dose aspirin and the prescription form of naproxen (Naprosyn). The study confirms earlier studies indicating naproxen may be safer cardiovascularly than some other NSAIDs, but as Dr. Matteson points out, whether OTC naproxen helps prevent cardiovascular effects has not yet been studied. And Dr. Schiff, at the press conference, stressed that point also, saying the results do not mean that Aleve should replace baby aspirin for heart attack prevention. What the news does do, however, is give rheumatologists, patients and pharmacists some reassurance and may help everyone make treatment decisions rather than feeling that no NSAID is safe.

Well, off to another session -- more to come later!

Naproxen press conference

2006-11-13T14:16:00.000-05:00

Dr. Michael Schiff speaking during a press conference at the National Press Club in Washington, DC, regarding results of a new study showing OTC naproxen (Aleve) has an antiplatelet effect when taken two or three times per day. That is, it may help prevent blood clots, providing reassurance that naproxen is a safer option when considering risks to the heart and blood vessels.

Busy press room

2006-11-13T09:34:00.000-05:00

Press conference just ended and now reporters from around the world are getting the arthritis news out to the public.

Monday morning press conference

2006-11-13T09:14:00.000-05:00

Arthritis Foundation-funded researcher Shreyasee Amin, MD, tells reporters why keeping thigh muscles strong is important for reducing knee pain. Arthritis Today contributing editor Denise Mann is in
foreground.

20 Pages of Notes!

2006-11-12T19:29:00.000-05:00

Yes, I took 20 pages of notes today, during sessions ranging in topics from tissue engineering to the impact of RA on relationships and sex. (Uh, Keith, we need to discuss "mutuality" when I get home -- study by AF-funded researcher Shelley Kasle, PhD, shows sharing thoughts and feelings is especially important to a woman's psychological and physical well being!)

I heard Dr. Rocky Tuan speak this morning about the fascinating work he and others are doing at the National Institutes of Health -- specifically the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). I've heard Dr. Tuan speak last year here in Washington, DC, at the 2005 Advocacy Summit. He explains extremely technical concepts so well and has a great sense of humor. I had the pleasure of interviewing him a few weeks ago on this very topic. Look for a feature article about his work and other work being done to develop cartilage regeneration techniques in an upcoming issue of Arthritis Today. The science behind it all is so cool, and it has the potential of relieving pain in so many people. Dr. Tuan ended his presentation this morning with a slide showing Bill Murray and other actors in the movie Ghostbusters. (If you know me, you know I'm not good at remembering actor's names, so my apologies for not being able to recall the other two. Feel free to add a comment if you know them!) Anyway, in that movie, Bill Murray's character says, "Stand back! I'm a scientist!" Dr. Tuan pointed out that for science, just like in Ghostbusters, you need a good team and the right tools (and of course, getting the right tools requires funding).

This afternoon I attended a presentation of data from the ACR Workforce Study (see photo of Drs. Chad Deal, Walter Barr and others preparing to speak just before the session started). This latest workforce study (they've done others - in 1990 and 1995) projects what life as a rheumatologist might be like in 2026. Will there be a lack of rheumatologists? Or will rheumatologists be in the same boat as other specialists? How will the projections released today affect you as a rheumatologist's patient? Watch for an article explaining the impact in a near-future issue.

The entire day here in the nation's capital has been dreary, rainy, chilly and windy. Not good for a walk around town, but I got plenty of steps in today just covering the floors in the convention center. I should have brought my pedometer! I'm pretty sure I've met the 10,000 step goal! Tomorrow should be nicer, and I'll be back at the convention center in 12 short hours. In the morning, there's a press conference on self-improvement topics. Come back to the blog -- I'll post more news and more photos.

acr hall

2006-11-12T16:18:00.000-05:00

Networking and socializing in the halls

Doctors preparing to release data from ACR's Workforce Study

2006-11-12T14:40:00.000-05:00

Join Me in DC!

2006-11-11T18:49:00.000-05:00

Woo hoo! The traveling went well today, and the weather is gorgeous -- sun and 70 on this mid-November day. And how nice to be in Washington DC on Veteran's Day. I went straight from the airport to the Convention Center and picked up a big batch of press releases. The embargo lifted about an hour ago, so I can start giving you details.

You know how for years doctors said osteoarthritis was due to "wear and tear" from living life? The joint was thought to wear out due to a build-up of life experience (i.e., age) -- cumulative effects of use, if you will. OA even earned the nickname of "wear-and-tear arthritis." But in the past few years, the wear and tear label started falling away, and researchers began leaning toward a possible genetic component to OA. On Monday, two researchers from King's College in London will present results from their study that prove your genes play a large role in whether you develop OA, as well as how it progresses. In the press release, one of the researchers says, "Without question, the propensity towards knee radiographic osteoarthritis, as well as the angle of the knees, has a direct link to genetics, at least in females."

The shape, length and strength of bones is determined genetically, so it makes sense that the way the bones of the thigh and shin align to form the knee joint is determined by genes, too. And if the bones align incorrectly, they wear incorrectly, so maybe "wear and tear" isn't a notion that will be gone forever. Instead, now we know of important factors that lead to the wear and tear.

Another study relating to improper wear will be presented tomorrow afternoon. That one, led by Dr. Joanne Jordan, from the University of North Carolina's Thurston Arthritis Research Center, shows that just a slight difference in leg lengths – as little as 2 centimeters (or just under one inch) – is related to knee and hip OA. Interestingly, a difference in leg length, regardless of which leg was longer or shorter, meant an increase in OA of the right hip and more severe disease. I'll see Dr. Jordan at a press conference on Monday, and I'll ask if she can shed more light on her results.

Good news, though! If you do happen to have knee OA, whether from genes, lots of birthdays or a discrepancy in the length of your legs, there is something you can do for it. A study that will be presented on Wednesday shows that strengthening the quadricep muscles – the ones on the front of your thigh - does not damage the knee but rather helps prevent the cartilage behind the knee cap from deteriorating. This study was led by Shreyassee Amin, MD, of the Mayo Clinic. Dr. Amin's research has been funded by the Arthritis Foundation for the past several years. She says that strengthening the quadriceps muscle makes sense because the strong muscles would keep the knee cap from shifting abnormally.

I have to say that I'm living proof of that theory. My rheumatologist, Theresa Lawrence-Ford, MD, recommended I do leg lifts to help reduce symptoms. I have been doing them for several months now (along with walking more) and my knee pain has stopped. Next step -- weight loss! And there's some news about that, too. Results from a long-term study that will be presented on Tuesday show that a healthy loss of 15 pounds in 16 weeks decreased the discomfort of knee OA. The better the people in the study began to feel – that is, their quality of life improved – the more comfortable they became with moving and the more motivated they became to keep up their weight loss efforts. So once you get going, you want to keep going – it's the getting going that's tough!

Well, there are many, many more good studies to talk about, but now I'm motivated to exercise. I'm going to head to the hotel fitness room for a while before I get to bed. I'll be up early to head to the Washington Convention Center so I can bring you more news from ACR. Check back throughout the day tomorrow!

Pre-ACR Anxiety

2006-11-08T01:47:00.000-05:00

Yes, the time this message was posted is correct: Middle of the night/morning on Wednesday. Just three more days to go before heading to Washington, D.C. for the American College of Rheumatology (ACR) meeting. I always lose a little sleep before a big trip because of having so many things on my mental checklist, which picks the darndest times to run through my head! One item on my list is to go through all of the press releases starting to inundate my e-mail inbox about presentations at ACR, and I've been doing that in this hour of lost sleep. Lots of news will be coming out of this meeting, but it's all embargoed, which means I can't tell you about it just yet. I promise I will, though, as soon as I ....(1) pick up my drycleaning, (2) pack -- can't forget quart-sized storage bags! (3) turn in some copy to our editor-in-chief, (4) get the final proofs of Arthritis Today's January-February issue to take with me and review, (5) make sure my kids and husband have what they need while I'm gone -- need milk! (6) get some sleep....

OK -- I'll give you one hint. I'll be attending a press conference at the National Press Club on Monday about a very common medication. Can't tell you any more, but you'll want to know! Have any guesses? Send them to me by posting a comment!

Excitement is building!

2006-10-31T09:30:00.000-05:00

In about 10 days, I'll be traveling to Washington, D.C. and immersed in the ACR annual scientific meeting – shuttling from the press room to the presentations in the Washington Convention Center's ballrooms to the humongous exhibit hall filled with displays of medicines, equipment, devices and research posters. I've been scanning the program and planning what I'd like to attend, but I've got a dilemma! As usual, there are so many good topics – new medications being developed; the latest information on causes of specific types of arthritis; current ways to diagnose; what lab test results mean; updates on conditions like Sjogren's syndrome, polymyalgia rheumatica, fibromyalgia, gout, osteoporosis, ankylosing spondylitis, Raynaud's syndrome, vasculitis, psoriatic arthritis and reactive arthritis; pain and overuse syndromes; knee braces and other devices for joint problems; lupus and pregnancy; pediatric rheumatology; alternative therapies; the importance of exercise; allergies and an update on the Arthritis Prevention Control and Cure Act (APCC; visit the Arthritis Foundation's Web site and click on the "Advocacy" tab to learn more about it). And more!

Getting to all of those sessions is certainly a challenge, because they often coincide or overlap. I'll continue creating my itinerary and waxing the soles of my shoes to help me speed around that convention center. But maybe you can help me weed through all the good sessions by telling me what topics most interest you. The conference program can be found online at www.rheumatology.org. Under "2006 Annual Scientific Meeting Abstracts Released," click on the underlined word "online" to get to the planner. Click on "browse" to see the lists of sessions and presentations. Then, shoot me an e-mail or add a comment to this post, and I'll prioritize the sessions I need to hit.

Welcome!

2006-10-09T16:26:00.000-04:00

The Arthritis Today Hot News Blog is underway! Stay tuned for late-breaking news from this year's American College of Rheumatology annual scientific meeting in Washington, D.C. The meeting starts November 11 and runs through November 15. I'll be attending lectures, press conferences, poster presentations and roaming the exhibit halls looking for news on research, treatments and products to make life with arthritis easier. This year, I'll be there not only as Arthritis Today's medical editor, but also as a patient. My recent diagnosis of rheumatoid arthritis gives me a whole new perspective this time. Looking forward to sharing what I find!