Sunday, April 16, 2017

Rough Times 2

I've been going through a difficult period with my rheumatoid arthritis. I told my cousin in California that so many people have it so much worse than I do (including her older sister) and it's not for me to complain (much) about the state I've been in lately.

Primary problem are the "flares" -- episodes of joint inflammation and pain that come on suddenly and aren't controlled by medications. My regular medications have little or no effect on flares, but until these latest episodes, I haven't had flares for more than a year. What's triggered it this time is unknown. I have my theories, but they're more speculation than anything else. I have not been prescribed any pain medication which is interesting. I've temporarily and sporadically self-medicated with left over prescription pain killers from previous episodes of sciatica, and they work sort of. Sometimes.

The doctor wants to put me on infusion treatment with rituxan which is apparently primarily used as a cancer medication. I don't have cancer (knock wood) but my rheumatologist is concerned enough about the return of flares -- and their persistence -- that she thinks it's time for something more heavy-duty.

I'm agreeable enough, although it will be very expensive all in all (I'll still be taking my regular meds, and I'll fall into the Medicare  Part D "doughnut hole" shortly which will mean out of pocket medication expenses of $700 or more per month. We can perhaps barely afford it. But many other expenses will have to be put on hold. I know any number of people are paying much more than that out of pocket for their medications. Thankfully, Ms. Ché has no out of pocket expenses for her meds, including insulin, the price of which has skyrocketed like so many other life-saving medications.

Ms Ché and I went to Los Alamos yesterday, and when we came back I was in so much pain I could barely walk. The pain persisted overnight, but it shifted from my lower extremities to my right shoulder after I took a pain pill. There it stayed till morning when I took another pain pill and the pain moderated somewhat -- at least enough for me to use my right arm (carefully.)

The doctor says the rituxan could make my rheumatoid arthritis condition go into remission, and that's why she wants to try it as she doesn't want me to keep going through these flare episodes.

My sister had lupus (a condition related to rheumatoid arthritis) for the last 20 years of her life, and from what I've learned -- including from my doctor last week -- the pain can be much worse and much more difficult to control than what I've been going through. Yes, I know she was sometimes in excruciating pain for which she got no relief most of the time. She just had to wait for it to pass. I didn't understand the condition she had at all, but now I think I do. Or at least I understand it better. My sympathy for her is stronger to say the least.

So we carry on. What else can you do?

Yes, onward!

No comments:

Post a Comment