The Funnel (funnel101) wrote in rheumatoid,
The Funnel
funnel101
rheumatoid

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Imminent Flare?

I've been noticing a dramatic increase in joint pain and stiffness since Monday this week. Granted, Monday I know I over-did—though I was acting under the assumption that I wasn't (which was a valid assumption at that time)—by spending an hour cleaning (litter boxes, vacuuming with the Swiffer, toilets) and then 25 minutes belly dancing. The pain began Monday night and got worse on Tuesday. It started with my left hip and left shoulder and then spread to my right knee, ankles, hand knuckles... I'm grateful that my jaw and neck are doing okay, but man, my legs are in bad shape right now. I just attempted to belly dance—I'd been doing 25 minutes 4 times a week and had only done one session so far this week—and had to stop a few minutes early because my right knee was hurting. This doesn't bode well.

I'm seeing my rheumatologist on March 8th and am expecting a medicine change. The question is: to what? Orencia was what she mentioned at my last appointment, when some of my blood work indicated active inflammation; but Orencia is an IV. Now, I don't have a problem getting the IV: the problem is getting TO the office (half an hour away and I'd need a ride, since Benadryl is always given with Orencia) and paying for it. Orencia, as an IV, would be covered under Medicare Part B, which means we'd likely be responsible for 20% of the total cost. I wasn't able to get a solid assessment of cost by Google searching, but the numbers I was able to get indicate that 20% could be $5000. For a treatment I'd need twice in the first month and then once every other month after that. Now, unless I'd qualify for some sort of financial assistance from the company that makes Orencia or the number is a LOT lower than that, that's just not a number we can work with. Period.

So, I'm hoping she has some other ideas for me. I was on Arava back in high school: it made my stomach hurt all the time, but I'd be willing to try that combined with Enbrel. Perhaps the combination of the two would work. I'm also going to ask about Simponi, Cimzia, and Kineret (daily injection, ugh) which are subcutaneous injections like Enbrel and would thus fall under Medicare Part D coverage.

I'm trying to remind myself that I'm well past due for a flare. I've been on Enbrel now for 10 years; it's wonderful that it's worked so well for this long. Still, I can't help but feel disappointed.
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