Biologics, Part 1

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?
Of course.

Do I want to minimize my chances of permanent joint damage?
Most definitely.

Do I have insurance coverage to mitigate the cost?
Good insurance.

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.

sigh

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.

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5 thoughts on “Biologics, Part 1

  1. I completely understand how you feel about this. When I had to start plaquenil I was sort of feeling the same way. It is one thing to know you have a disease, but completely another to admit it with no doubt once you start medicine for it. Good luck! And I’m sorry you have to take this next step, but hopeful it will make you feel better!

  2. I believe I understand your reaction, WarmSocks. You seem, from your writing and the subjects you choose, to be a very precise person. You function well with lists and the control that comes with itemizing and organizing. Everything neat and compartmentalized and in it’s place. I can’t tell you how much I admire your skills and discipline in this area — I’m in kindergarten to your Master’s degree when it comes to ducks-in-a-row.

    And you know what? Rheuma just won’t be categorized. It refuses organization. It’s maddeningly random and chaotic. And, as I’ve written before, rheuma is sneaky. Just when you think you have it locked into a crate, it makes itself ultra small and slips through the wires. It hides, then leaps out at you just as you’re getting ready for an important task.

    That’s why, I think, that you’re resisting acceptance of both the disease and the treatments. Then there’s the knowledge that the treatments, as great as their possibilities are in terms of relief and possible remission, carry a heavy price in side effects and, in the case of the biologics, cost. These things are hard to accept, as well. And because RA is so individual, so unpredictable, there’s no telling whether the damned drugs will even work or not. Or if they do, for how long?

    I think you’re perfectly normal for being uncertain and disgruntled. I’d never laugh at that. This is all too serious and too frustrating. Instead, I’m wishing you good research and luck, when the time comes. Sending warmth and smiles your way, I am.

  3. I want to offer some reassurance if I can. I was diagnosed with RA almost three years ago. I had no idea what was wrong with me, but the bottoms of my feet were killing me, my hands were swollen, and I had zero energy. Once the diagnosis was made, my rheumy took me thru the paces of trying several DMARDs (arava, plaquenil, methotrexate), all of which were less than friendly to my stomach, to say the least. So she put me on Enbrel about two years ago, and I swear it was a miracle. I felt almost total relief from my symptoms in just a few days after the first shot.

    Now all I take is Enbrel, and a daily dose of naproxen, and I feel really good. Sure, I have some bad days, when I overdo it, but I can handle that. At least I feel normal again. In fact, a few months ago I asked my rheumy if I should stop taking Enbrel since I felt so much better, and she advised against that. Remissions can be fleeting.

    Biologics are medications – sure they are new and different, but they are well-studied and well-tolerated. In fact, I continue to keep up on new research studies about Enbrel (which has more data since it’s been around the longest), and everything I read is so reassuring. Side effects are very minimal (I’ve never had any), and long term usage has proven to be safe and effective.

    I was initially terrified of injecting myself every week, but very quickly got over that little phobia, once I realized how much better that shot would make me feel. Sure, I sometimes feel like I have a horrible disease that requires such a treatment, but you gotta do what you gotta do. Just do as much research as you can, and take whatever your next step may be. And good luck!

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