Well I had my final Rituxan infusion. This time the infusion took 2.5 hours which was not necessarily a good thing. I could still feel the effects of the Benadryl driving home (feeling loopy!) from the hospital . So for now I have to sit back and wait to see if it works on stopping the current DM flare-up.
Friday there was a Live Discussion on the TMA web-site about Rituxan. Click here for the transcript. The main thing I picked up on is that it takes 2-4 months to know if it will work or not. That is mid-July to mid-September in my case.
It is interesting to learn the FDA did not approve Rituxan because the Rituxan In Myositis (RIM) trial is considered a failure even though it helped 87% DM/PM patients. The reason being that there was no difference in the trial between patients who got Rituxan early versus those who got it late.
This makes Cigna’s decision to deny me for Acthar but approve me for Rituxan even more baffling, considering the former is FDA approved for DM. (I’m not arguing as I got both drugs at no cost to me.) Genentech, the manufacturers of Rituxan, did deny me use of their Genentech Rheumatology Co-pay Card Program as DM/PM is not an approved condition it treats. Click here for information on that program.
Two more weeks of Acthar until the end of my injections, which can’t come soon enough. I have pretty much resigned myself to that stuff not working. At least in my case.
Physically it has been another tough week. I had hoped that the weakness I felt last week was due to physical exertion caused by rummaging around the crawl-space and moving in and out storage bins. I’m finding that if I over-exert myself it doesn’t just take it out of me for that day, or the next, but a couple days. I’m drained most of the time.
I feel a lot weaker this week in my arms and legs. I can no longer lift heavy items from the shopping cart (this included not being able to get Conor out of the grocery cart seat!) and stairs are getting harder. Last night my arms and legs were aching in bed for hours even though I had an easy day.
Looking forward to the benefits of Rituxan — *Fingers Crossed* they start soon!