I am a 41 y.o. who was officially diagnosed with Juvenile Rheumatoid Arthritis in 1983. Since 1989, I have had 6 hip replacements, 2 knee replacements, 1 shoulder replacement, arthrodesis in the finger joints of the left hand. I have tried just about every med., except the TNF ones. I am seriously contemplating going on Remicade, but with all my metal, it ABSOLUTELY terrifies me. Currently I am going to a Pain Clinic and am taking Kadian along with Ibuprofen, and several natural supplements. I haven't felt this good EVER. Of course, the fact that Kadian is a narcotic explains this, but, I am wanting to try the Remicade to prevent any further joint degeneration. I have it in EVERY joint. It has been so awesome for the past two months to be able to just feel kind of normal. I sleep every night, all night. I can clean my house by myself, I can do a reasonable amount of volunteer work and cook dinner for my husband. My question is this, Is there anyone out there who has had this as long as me, and was as young as I was? Is anyone else going to a Pain Clinic, and getting their constant pain treated with opioids? Part of me would like to keep trying new RA drugs and try to stop the Kadian, because of the stigma associated with opioids, and to prevent any future joint replacements. But the other part REALLY doesn't want to risk getting an infection in any of these artificial joints, or adding lymphoma to the mix. Is there anyone out there in my little boat?
Hello & Welcome to the site. You are in the right place for support!
You sure have been through a lot for someone only 41 yrs. old. I'm 43 and have only been diagnosed in the past year. You probably have a lot of advice for others on this site.
I do have a question for you. My left middle finger joint has completely been destroyed from RA. My ortho doc has recommended joint fusion or arthrodesis. I want a joint replacement, but he says they aren't done very often and they don't last very long (4-5 yrs). What is your experience with the fusion. Are you still able to do things with that hand, can you grip, open cans brush your hair?
I am surprised that you aren't already on Methotrexate, Enbrel, Humira Remicade or something like it. These are they types of drugs that will hopefully force your RA into remission and slow or stop the progression of the disease and stop more joint damage.
Well, I wish you luck and hope you stay on this site. Keep us posted as to your progress!
God Bless!
Well, I wish you luck and hope you find what you are looking for here.
Hi Laura! Thanks for the encouragement. I feel as though I have been through quite a lot, but at the same time, others are worse. In fact, that is kind of my motto. "It could ALWAYS be worse!" (This only works when I say it about my own situation, of course.) As for your question about arthrodesis, I had it done on my left hand in 1990. I had originally gone to an orthopaedic dr. and he suggested joint replacements, but at that time I was only 17 and from x-rays they could tell that I still had some growing to do. So replacements were not an option at that time. By the time I got my nerve up to go again, they were no longer doing finger replacements because they had found they didn't hold up over time. The second knuckles on each of my fingers had frozen in a claw-like position, and arthrodesis was suggested. Naturally, I was terrified, but felt it was neccessary. It was a piece of cake, and I have never regretted it. (BTW I'm right handed w/ambidextrous tendencies) I now use my left hand more than my right, but I am not able to write with it, because other joints in my hand are partly fused, so holding a pen is difficult, not impossible, just really hard. I have more strenght in it because the once weak and tender joints, are now stable and pain free. Plus that hand looks more "normal" and I like to wear my wedding ring! I recently met a lady who had finger replacements several years ago, and while like me, nothing much stops her, her hands are very deformed. Seeing that, made me happy I went with the choice I did. My advice would be to talk to several people who have had them for many years, and see how it has worked out for them, and if you have any more questions, please feel free to ask....