Category: Home Life

People often ask about how my health has been.

My rheumatologist and the one I saw at Brigham & Women’s Hospital agree that I have symmetric psoriatic arthritis, finally answering the question of psoriatic versus poststreptococcal reactive arthritis, although it must be pointed out that this is not a definitive diagnosis, but rather a differential one based on the presence of psoriatic skin lesions and the lack of reactivity to methotrexate alone.

I haven’t written much because, frankly, there hasn’t been much to say. While continuing treatment with methotrexate, the inflammation which has made it painful to move in certain ways (and at time nearly impossible) has stayed almost the same for months; the psoriasis—apparently the start of the whole mess—has actually gotten worse. After several months when the arthritis symptoms were quite severe, most of the duration of this has been more mildly debilitating.

I’m now able to move well enough to use our elliptical machine at home nearly every day. I was only really “down” about this illness once, when I realized there was no way I could participate in a planned outing to The Strategy Zone that I’d been anticipating for nearly a year. (I actually cried about that one.) It is very hard to lose weight (although I’ve taken off 4 pounds since Thanksgiving), even with Nichelle monitoring and prescribing my diet. It hurts to do things like put on and take off shoes, and exercises like Tao-Bo and running are out of the question. Until this became bad in early June, I was running about two miles every day—something I had worked since the previous November to be able to do. I’ve been able to help compensate for the psoriasis by spending the drive to work and back brushing my hair, which helps keep me—mostly—from looking like a Head and Shoulders commercial. (Finding a brush that was stiff enough was amusingly difficult.)

To be honest, it was much harder to see Nichelle suffering all that time under her vitamin D deficiency and being unable to do anything to truly help her. Being the “sick one” is sometimes very mildly discouraging, and somewhat painful, but it hasn’t been that bad. I also have much more sympathy to those with movement disabilities or rheumatoid arthritis.

Yesterday I took my first dose of Humira, a band name form of adalimumab, which is a tumor necrosis factor-alpha inhibitor. TNF is part of the inflammatory process, and inhibiting it reduces inflammation.

However, in addition to some other potential side effects, Humira is an immunosupressant, and can leave one open to infections and other illnesses. (For this reason I had to be very carefully screened for tuberculosis.) It also has to be injected, although only twice a month, and it’s only subcutaneous, and nearly painless. (I’ve had blood draws that hurt more.) It’s also very expensive—I believe about $20,000 per year—but insurance covers that, and the manufacturer even pays my co-payments.

On the bright side, in 4–8 weeks, I might start to see some reduction of symptoms, although the full treatment often lasts a year.

Thanks to all of you who are praying, and for all your kindnesses along the way.

The reactive arthritis—if that is what it is (see below)—continues. Some days are better than others, and it’s much easier than it was a number of weeks ago, but it really isn’t going away. Last night I was able to do some ab[dominal] crunches (something I expect to do daily now), and I also spent a short time on the exercise bike, but couldn’t use my left arm or either leg, only my right arm, because of the joint pain in my knees and shoulder. My prayer is that my legs, fingers, and shoulder will improve enough for me to exercise the way Nichelle wants me to the way I want to. (It also means I’m not likely to be doing any real hiking or bicycling during this glorious summer, which is more than a bit disappointing.)

Of course, there’s a possibility that this isn’t poststreptococcal reactive arthritis—it might be psoriatic arthritis. On the other hand, it might have started as one thing, but be developing into any one of another inflammatory arthritic condition. (I do also have what appears to be psoriasis on my scalp—which Nichelle gets credit for noticing and making sure I discussed it with my doctors as possibly related.) Or perhaps I’m just faking this to get out of Nichelle’s “new and improved” workouts … or maybe it’s Munchausen syndrome … or maybe even Nichelle is secretly causing this, making it Munchausen syndrome by proxy.

I should add that my follow-up echocardiogram and EKG were both fine, so we have now officially ruled out rheumatic fever.

According to Dr. Eranki, I have an atypical presentation, which means that my symptoms don’t exactly match one particular flavor of arthritis, making diagnosis even more difficult than usual. In other words, I am just weird.

I start on methotrexate today. Methotrexate is officially a chemotherapy drug, but is also used to treat psoriasis and arthritis and other rheumatic conditions. For those of you who want to sound smarter than your peers, you can tell them it’s a DMARD (disease-modifying antirheumatic drug), which decreases the pain and swelling of arthritis and reduces both the damage to joints and the risk of long-term disability.

Discussion of the drug prompted a surprisingly emotional reaction. Having a new medication introduced as a chemotherapy drug … knowing the side effects of many chemotherapy drugs, I was leery of trying it. I also realized for the first time that the medication “reduces the risk of long-term disability”—dragging me into the understanding that the near-constant joint pain and swelling isn’t merely an inconvenience, it could make the rest of my life more difficult as well.

At any rate, I spent the past few days reading up on the medication, carefully observing that the arthritis isn’t going away, and a while yesterday peppering the Dr. Eranki with questions, before deciding to go ahead with this phase of treatment. Even with this, it will be at least 6 weeks before the methotrexate has any noticeable positive effect.

However, I am grateful that the fevers finally seem to be mostly gone, and that I am able to work and do many other things normally or with minor restrictions. These blessings have not always been available to me throughout this illness, and I thank the Lord daily for them.

Onward …