We all struggle

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!

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

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

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

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

Dr. Jason Theodosakis

Dr. Theodosakis speaks about glucosamine.

Lots of interest

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

A new wrinkle and some reassurance

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

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

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

Monday morning press conference

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!

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

Networking and socializing in the halls

Doctors preparing to release data from ACR's Workforce Study

Join Me in DC!

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

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!