Aren’t You Special?

Elliot Bay- Seattle, Image via Wikipedia

The sun was out in full force in Seattle yesterday which is rare for late October. But there was little time to enjoy the blue skies and views (I get the most amazing view of Elliot Bay and the Olympic Mountains as I drive to work. The first dusting of snow was visible on the peaks). Instead, it was a busy day filled with a variety of medical activities starting with a visit to my rheumatologist.

It had been three months since the last visit. There was much to catch up on…the recent sinus infection (I’m supposed to stop taking Humira if the infection persists), check on the status of my fingers (they seem to be stable), carpal tunnel (the nightly use of wrist guards have that under control), and get an annual flu shot (I laughed at the puny size of the needle compared to Humira). Then there was issue with the Achilles tendons. Having been down this road before and having surgery on both sides, I can tell that they are tearing again. After much discussion about the situation, my rheumatologist stated,

“This is a complex situation and you should really see an orthopedic surgeon who specializes in feet and ankles.”

I spent much of the rest of the day trying to find such a specialist and set up an appointment.

This experience made me realize just how deep I’ve gotten into the world of the medical profession. I no longer see generalists like family docs and internists, but specialists who are focused on narrow areas of medicine. According the American Board of Medical Specialties,

“Medical specialty certification in the United States is a voluntary process. While medical licensure sets the minimum competency requirements to diagnose and treat patients, it is not specialty specific. Board certification—and the Gold Star—demonstrate a physician’s exceptional expertise in a particular specialty and/or subspecialty of medical practice.” [i]

There are 24 boards running the gamut of many specialties.[ii] Rheumatologists are typically Board Certified in Internal Medicine first. Within internal medicine, there are 22 subspecialties including rheumatology.[iii] In order to be certified in rheumatology, the physician must complete the following requirements:

• At the time of application, be previously certified in internal medicine
• Satisfactorily complete the requisite graduate medical education fellowship training
• Demonstrate clinical competence in the care of patients
• Meet the licensure and procedural requirements
• Pass the Certification Exam in Rheumatology[iv]

My rheumatologist, in addition to being trained at a top notch university and medical school, holds board certification in internal medicine and rheumatology. He keeps current with ongoing training and reading the professional literature.

My search for an orthopedic surgeon with a subspecialty in feet and ankles was not easy. Most orthopedic surgeons focus on the more common areas like knees, shoulders, hips, and spines. After checking on several names given by my rheumatologist, looking at doctor reviews, and calling a few offices, I was getting a little frustrated. Fortunately, Seattle has a local medical school – one of the premier centers in the country. At this center, there is an orthopedic clinic devoted to feet and ankles. It was born primarily out of trauma treatments being developed in the 1960s. People would come in with smashed feet and ankles from accidents and the orthopedic surgeons began to develop wild, new procedures (like inserting screws into bones) which became the standard of care worldwide. In addition to being members of the American Board of Orthopedic Surgery[v], the doctors of this clinic are also members of the American Orthopedic Foot & Ankle Society[vi]. My previous orthopedic surgeon (who I can no longer see due to changes in insurance) did his fellowship at this clinic. I decided that I didn’t want just anyone messing with my ankles the second time around, so I called and immediately made an appointment. While I can’t predict what the outcome will be (I’ll write future posts about it), I’m glad for the access to specialists who can treat my “special needs.”

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[i] http://www.abms.org/About_Board_Certification/means.aspx

[ii] http://www.abms.org/About_ABMS/member_boards.aspx

[iii] http://www.abim.org/specialty/rheumatology.aspx

[iv] http://www.abim.org/certification/policies/imss/rheu.aspx

[v] https://www.abos.org

[vi] http://www.aofas.org

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My Love-Hate Relationship with Immunosuppressant Medicines

Towards the end of a whirlwind of recent travels, a never ending headache set in. Many factors historically caused me headaches including migraines, stress, and reaction to medications (see earlier post re. Humira). When I was driving home from work yesterday, I began to connect together a set of other symptoms…constantly clogged left side of nose, pressure around my left eye, pain on the molars on the left side, and a recent spate of colds that made the rounds with my children. A sinus infection seemed to be the culprit. By Friday afternoon, the medical options are pretty slim but I swung into the local urgent care. Surprisingly they were not busy and within a few moments I was diagnosed with a sinus infection. I was prescribed the fast acting antibiotic Azithromycin and I coupled that with a decongestant and a neti pot to cleanse the sinuses. Upon waking this morning, the headache and pressure was gone and it remained that way all day!

As an autoimmune disease, RA is treated by medicines that suppress the immune system. If the immune system can be suppressed, then it will be less likely to attack itself and the symptoms of RA can be controlled. Drugs used to treat RA like methotrexate and the biologicals are immunosuppressant drugs. I’ve been on an immunosuppressant for the past 1 ½ years…Enbrel, Cimzia, and now Humira. According to Humira’s website,

“HUMIRA is a TNF-blocker medicine that can lower the ability of your immune system to fight infections.” [i]

Before starting on a biological, a negative tuberculosis test is required. Upper respiratory infections, including sinus infections, are first on the list for common side effects for Humira.[ii] This isn’t my first infection while being on a biological medicine. I had a urinary tract infection about 8 months ago and had a couple months of swollen lymph glands around my neck which was attributed to some unknown infection (likely viral). Lower on the list of side effects are cancers like lymphomas. Although it’s easy to get freaked out by such statements and decide not to take a biological treatment for RA, the chances for this occurring are very low and the benefits outweigh the risks for most people.

On one hand, I’m thankful for Humira and its impact on treating my RA. I’ve had pretty decent energy and bone erosion in the fingers seems to be halted (see earlier post). (Although I’m starting to debate Humira’s effectiveness because of ongoing problems with my ankles. It’s just impossible to tell what things would be like without Humira). On the other hand, I don’t like the fights with infections that are likely caused by having an suppressed immune system. There always seems to be a set of tradeoffs when it comes to the imperfect science of medical treatments.

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[i] http://www.humira.com/

[ii] http://www.rxabbott.com/pdf/humira_medguide.pdf

Photo Credit Creative Commons License http://www.flickr.com/photos/chaparral/

 

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RA-mbling Man

Three cities in three days…that’s been my recent experience as I’ve rambled across the country. Last Thursday, I got up at 4:30 in the morning to catch a 7:00 flight to Spokane for a board meeting and professional conference. After two busy days, I got home to Seattle Friday evening around 10:00 p.m. The following day I drove my daughter over the Cascade Mountains to a soccer game in Ellensburg, Washington. It was a glorious autumn day full of sunshine, sports competition, and turning leaves (at least on the non-evergreen trees). After church Sunday morning, I caught a five hour flight to Alexandria, Virginia for another work-related meeting. And it’s from Virginia on the other side of the country that I sit preparing this post pondering how RA affects travels.

Traveling can be stressful enough without battling RA. Getting out of routine, waiting in lines, sitting cramped in small spaces with crowds, changes in diet, and time zone differences can wear on anyone. But it can wreck havoc on someone with an autoimmune disease that increases fatigue. During these busy few days I’ve made a special effort to take time to relax and allocate energy and resources carefully. Not wanting to have a loss of sleep exacerbate things, I find that the judicious use of a safe sleep medication such as Ambien can work wonders.

That brings up another set of issues – traveling with medications. It just so happens that my scheduled injection of Humira is due while away. As a delicate genetically engineered protein, Humira must stay refrigerated. I carefully packed my auto-injector pen in a portable cooler and threw in three ice packs. I also made sure I had an alcohol wipe and bandage. I placed this in the middle of my clothes for added insulation and checked my bag figuring that it would last the seven some hours of total travel time. When I opened my luggage in my hotel room, it was still a perfect temperature. I quickly placed the medicine in the small fridge in my hotel room and it’s all ready for tomorrow’s injection. In addition to Humira, there’s the assorted other medications that must be brought along and I use a pill organizer keep in my carry-one bag.

With careful planning and preparation, things went swimmingly well. That was until late this afternoon when I decided to get some fresh air and go for a walk around Alexandria. As I returned to the hotel, I noticed my right Achilles getting painful and tight. By the time I got ready to meet colleagues for dinner, I could barely walk on it. Not able to take NSAIDS, I don’t have many treatment choices other than ice and rest. But I will likely blow off the ice since I don’t feel like tracking down the ice machine and finding a bag in which to put it. Based on prior experience and surgeries, I suspect that the tendon is tearing again. I’ll make adjustments and try to stay off it as much as possible knowing that this will be the first topic of discussion when I see my rheumatologist next week.

Thus far it’s been a productive and pleasurable set of excursions away from the comforts and routine of home. Prior planning and careful use of time and energy makes the difference between a miserable trip and an enjoyable one.

Photo Credit Creative Commons License http://www.flickr.com/photos/booleansplit/

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A Weighty Matter

A work colleague made a statement yesterday that many would consider a compliment…”You’ve lost weight.” True enough, I’ve lost about 15 pounds over the past few months. The problem is, I was not purposefully trying to lose weight. There have been no dramatic changes to my diet. On the other hand, exercise had not been much of a possibility due to knee and ankle problems. One would suspect that weight gain would be in order given the lack of exercise. The topic was raised with my rheumatologist in early August and he immediately tested for thyroid problems and diabetes – two common causes of quick weight loss. But both of those tests came back negative. I’ve always been considered skinny. I weighed 129 pounds my senior year of high school (and that was probably soaking wet). Of course, age and changes in metabolism set in but I’ve remained at or below average for weight. So the mystery of the quick weight loss remains unsolved. But I’m beginning to wonder if RA is the culprit.

According to the Johns Hopkins Medical School arthritis website,

“Patients with RA are considered to be at nutritional risk for many reasons. One cause of poor nutritional status in this patient population is thought to be the result of the weight loss and cachexia linked to cytokine production. In patients experiencing chronic inflammation, the production of cytokines, such as interleukin-1 and tumor necrosis factor, increases resting metabolic rate and protein breakdown.” [i]

Interestingly, this statement is under the heading Malnutrition. The medical definition of cachexia is “Physical wasting with loss of weight and muscle mass caused by disease.”[ii] Muscle wasting is the most common cause of weight loss in RA patients. [iii] [iv] The only real proposed treatment is physical activity to keep muscle mass as increasing protein intake has no effect. [v] [vi] Treatment with a TNF blocker like Enbrel or Humira may help but studies comparing their use to methotrexate demonstrated no differences. [vii]

Perhaps my metabolism has increased as a result of RA. I’m currently on Humira, a TNF blocker and yet the weight loss continues. In the meantime, I’ll keep stepping on the scale and discuss it again with my rheumy at my next appointment. I guess I should go sign up for a membership at the local pool because no other exercise regimen seems possible at this time.

photo credit Creative Commons License http://www.flickr.com/photos/oter/

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[i] http://www.hopkins-arthritis.org/patient-corner/disease-management/nutinra.html#ref_3

[ii] http://www.medterms.com/script/main/art.asp?articlekey=11065

[iii] http://www.ncbi.nlm.nih.gov/pubmed/12163213

[iv] http://www.ncbi.nlm.nih.gov/pubmed/18666027

[v] http://www.ncbi.nlm.nih.gov/pubmed/15940763

[vi] http://www.clinicalnutritionjournal.com/article/S0261-5614(05)00020-8/abstract

[vii] http://www.ajcn.org/cgi/content/abstract/84/6/1463

 

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Seronegative RA

Image by pollyalida via Flickr

Things are pretty hectic these days and that typically brings an increase in fatigue and joint symptoms. It doesn’t help that my Humira injection is due tomorrow but I’m itching to take it today with the notion that it may help me feel better. Of course, today I read of a study demonstrating that stress increases the release of inflammatory proteins like TNF alpha.[i] But I was more intrigued by the Arthritis Foundation article about how long it takes for rheumatic diseases to be diagnosed.[ii] Average time to diagnosis varies (see table below) but it is clear that folks with these diseases suffer for a long time before getting proper treatments. The article states, “Many rheumatic diseases have symptoms that overlap, and blood tests are rarely conclusive.”

Rheumatoid arthritis 6 to 9 months Juvenile arthritis             5 months Fibromyalgia                    2 to 5 years Sjögren’s syndrome         3 to 7 years Ankylosing spondylitis    6 to 9 years

Such was the case with me. After being referred by my general practitioner (an internist), my rheumatologist first suspected ankylosing spondylitis since my primary symptoms at the time were uveitis (inflammation of the iris) and achilles tendon problems. But my blood test for HLA-B27, the common genetic marker for this disease, was negative. About the same time, other tell-tale symptoms of RA began appearing…middle finger joints, wrists, elbows, knees – all occurring symmetrically on both sides. Bone erosion was noted via x-rays. Morning stiffness (what’s that? I’m stiff all day long!) and overwhelming fatigue (the truck running over you type) wrapped it up for the rheumy and he diagnosed me with RA.

This diagnosis was made in spite of negative RA factor blood tests. My RA factor tests have always been “borderline”…it’s not a black and white test. Another antibody test, anti-cyclic citrullinated peptide (anti-CCP) is another one used to determine RA. So far, I’ve been negative on that one as well. Therefore, I have what is called “seronegative RA.” I met the criteria using the now outdated diagnostic criteria.[iii] The diagnosis criteria were recently updated[iv] and according this new system, I still meet the diagnostic critieria without having positive blood tests. My rheumy regularly mentions that seronegative RA patients tend to fare better with symptoms over the long run and this is borne out by research.[v] Some seronegative RA patients “convert” over time…they end up with positive tests. Interestingly, a large proportion of folks diagnosed with RA are seronegative…up to 30% in some studies.[vi]

Being seronegative makes me feel somewhat like the stepchild to those who are seropositive. Maybe I’m not “official enough”. But then I have to step back and remember that my symptoms are real, I have permanent joint damage, and I’m forking out upwards of $20,000 a year for biological treatments (well ok, my insurance covers most of it). Perhaps I will seroconvert someday. But in the meantime I’ll hang onto the research that says that us seronegative RA types have a better long term prognosis.

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[i] http://www.arthritistoday.org/news/social-rejection-stress-inflammation080.php

[ii] http://www.arthritistoday.org/daily-living/relationships/you-and-your-doctor/rheumatic-diseases-misdiagnosed.php

[iii] http://www.hopkins-arthritis.org/physician-corner/education/acr/acr.html

[iv] http://www.rheumatology.org/practice/clinical/classification/ra/2010_revised_criteria_classification_ra.pdf

[v] http://www.ncbi.nlm.nih.gov/pubmed/3855618

[vi] http://onlinelibrary.wiley.com/doi/10.1111/j.0105-2896.2009.00856.x/full

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