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.