Somehow I’ve had the notion that my particular brand of RA was on the mild side. I didn’t have a dramatic onset, two rheumatologists have said my presentation is “atypical,” and my inflammatory markers have always been in the normal range (low-normal, not high-normal). With pretty good success on the milder DMARDs, I’ve felt “I don’t like this RA diagnosis, but I can handle it.”
I think back to two years ago. Every morning I would get out of bed and yelp in pain when my feet hit the floor. I learned a variety of tricks to avoid shaking hands with people because this previously simple, polite custom had become painful and not so simple. For the first time in my life I ran out of tylenol.* That went away when I started plaquenil, and I thought I was well-controlled.
Then things got worse, I added a second DMARD, and things improved… I added a third DMARD and was able to start wearing my rings again. That’s pretty well controlled, right?
When I think of whether or not the meds are working, I compare how I’m feeling at the moment versus that awful few months when I was taking maximum doses of both tylenol and motrin and still woke in pain every night. I’m doing much better than that, so I must be okay. Right?
My rheumatologist doesn’t agree. The goal is well, not to settle for somewhat better. After five weeks on an increased dose of methotrexate, I should have improved. Instead, she saw more inflamed joints than ever before (hey… maybe I should stop the mtx!). She said it’s time to start a BRM. And I know she sorta mentioned it last month, but I thought that would be maybe. Someday. Somewhere in the hazy future. Not now.
The thought terrifies me.
My poor rheumatologist is probably wondering what happened. She told me a couple months ago that we were establishing what does and doesn’t work so that there’s data to present to the insurance company if that becomes necessary. Last month she said that the next step would be a stronger med. She didn’t say which stronger med that would be, but it’s not exactly a secret that biologics are what comes next after combination DMARDs fail.
I don’t want to take a biologic. And I’m trying to figure out why.
Do I trust my rheumatologist?
Yes (unlike the previous one).
Do I want to feel well?
Do I want to minimize my chances of permanent joint damage?
Do I have insurance coverage to mitigate the cost?
So what is the problem?
Biologic Response Modifiers are for sick people with serious disease. I don’t want that. I.want.to.not.have.that. A little piece of me (don’t laugh) was holding onto the “atypical presentation” remarks. I kept hoping that one of these days lab results would show up and make everything clear. That one day the doctor would walk into the room (I said not to laugh) and say it was all a mistake. That I don’t really have RA, but instead it’s something simple and easily curable now that we know what it is.
Apparently that’s not going to happen and I am being completely illogical. Which bugs me. I’d much rather operate rationally than fly on ever-changing feelings.
Guess I’ll be learning about biologics.
Tomorrow… objection #2
*With a large family, we usually buy things in bulk. Acetaminophen and ibuprofen were the exceptions. We’d buy the smallest bottle possible, use a couple, then throw the rest away a year or two past the expiration date. Now I buy the humongous bottles at Costco and they never have a chance to expire.