I've been living with RA for 22 years now, and in that time I've managed to stave off the worst of the disease by using "the latest" drug out there and by having surgeries to correct the worst of the damage that made it past the drugs. Now I've exhausted pretty much everything, the NSAIDS, the DMARDS, the biologics - Methotrexate, Celebrex, a lot of drugs I've forgotten the names of, Arava, Remicaid, Orencia, and the latest in the series, Rituxan. Most drugs helped a little or a lot, but gradually became less effective with time. Now I find myself with no "white knight" in the form of a miracle drug to save me - now what? How many of you find yourself in this position, and how do you cope? I've discovered the gentle easing of pain with meditation, but what do you do on those days when you lie in bed and you can't lift your hand to scratch your nose, and you can't get out of bed because you don't have the courage to stand up because of the terrible pain in your feet and knees? How do you deal with this level of pain and disability? Any white knights on the horizon?
) to really hear us. I'm on Rituxan now, and it is actually working! The knees are doing better since I had a course of hyaloneuric acid injections into the joint - makes a good lubricant! I moved to Hawaii to be with my sister, who has been awesome in her support. I even swim in the ocean sometimes. I came very close to giving up, but I'm glad I didn't. Life isn't perfect, but it can still be sweet if you fight for your right for good care. A side note: after I got a divorce, I was eligible for extra help from Medicaid, which has been invaluable.
For some of us, these medications work for a little while and then you have to move onto another and then there are the lucky ones, who get to be on one medication for up to a decade and it works perfectly well. In terms of medication, are there any possible drug trials you may be included in? What does your rheumatologist say?
Recently MsFluttersBie, one of our other users, wrote a post describing her situation which is similar to yours - you may want to read it or send her a message. I left a comment on that post about a number of alternative therapies that may offer some symptom relief and included a number of links to articles on this site about diet, supplements and home remedies that may also be helpful. Instead of repeating that here, it might be easier if you pop over to MsFluttersBie's post and read the comment there.
Thank you for posting. We have a terrific community with very supportive members here and are here to help you as much as we can. Please post again and let us know how you're doing.
Thanks Lene! That was a very helpful post for my situation. I have cardiovascular disease which unfortunately has eliminated me from drug trials so far, but I'm still hopeful. If you know of something in particular, I'll try to talk her into it! When I was studying OT at USC, we had a guy from one of the major drug manufacturers come in, and one of the drugs he was talking about was very promising for RA. At the time, the drug company had abandoned the trial process because they reasoned that there were not enough "consumers" i.e. RA patients, to justify the cost of trials. Now there are many more "consumers" so hopefully the drug companies will continue to invest their time and effort in searching for a cure for us. In the meanwhile, my rheumatologist has put me on long-acting morphine, so that should help with pain control, and the alternative therapies are definitely worth a try!