Posted 11/25/2011 2:38 AM (GMT -7)
Hello, I've just been having another one of those restless nights where the pain just won't go away, and I came upon these forums in my late night browsing
Where to start... I'm currently 20 years old and have been experiencing joint pains for a little more than 2 years now. At first it was minor enough - just some shoulder and hand pain, and things like NSAIDs were able to bring it to a tolerable level. I figured maybe I just injured myself playing hockey with my friends. But the pain just kept persisting and getting worse. My family history is very strong for autoimmune disease, so that's where they started looking. Well bloodwork hasn't really resulted in anything conclusive, but for now the working diagnosis is that I've got a seronegative Rheumatoid Arthritis. The disease has been fairly aggressive for the most part - there was a fairly extended period where I would get back pain that made it extremely difficult to walk, I couldn't climb stairs at all, driving became an issue, and I just had a hard time doing things that I used to take for granted. I'm currently taking a break from school since during my last semester my ability to attend classes was severely compromised (had I not had some very excellent and understanding professors, I probably would've failed... thankfully they were all great).
As far as medications go... My primary care phsyician has been prescribing me Morphine for a while now (90mg Avinza, and 15mg Morphine Sulfate IR PRN). My rheumatologist has prescribed all sorts of medications --I've been on steroids for quite a while now, I'm on methotrexate, I cycle through some sort of NSAID every now and then, and I've gone through many different types of immunosuppressive drugs such as Humira and Enbrel.
Anyway my treatments have ranged from moderately helpful to no effect at all. The steroids do help with the inflammation, but I've gotten so many other side effects despite limiting my dose. I've gained 60 lbs in a very short period of time, I formed really dark stretch marks all over my body, and I generally feel miserable. The other immunosuppressants have been hit or miss. Typically they'd work for a couple months, and then everything would start coming back.
My latest immunosuppressant is a drug called Remicade. After the initial loading dose, it's administered every 4-6 weeks. I'm at 7.5mg/kg (which from what I understand is a higher dose than what most people start with). Honestly, so far this seems to have the most hope. I don't want to jinx it, but I don't feel nearly as miserable as I did say... 6 months ago. I'm walking without a cane again, and I'm able to climb stairs with less difficulty. It has improved to the point where I am going back to school (keeping my load light though). I do hope to be off the steroids completely, at which point I will work with my doctor on weening me off the narcotics. The narcotics never had much of an adverse effect on me, but I feel that the fewer medications I need, the better. If remicade works as well as they hope, my disease should hopefully go into remission.. at which point maybe I can get some of my youth back.
With that said, I definitely am not at that remission point though - I still wake up with a few hours of stiffness, I definitely have some days where it feels like every inch of my body is burning... but all we can do is hope, right? According to my father (who is also a doctor), there are some exciting medications for autoimmune disorders that should be approved within the next year or so, so the outlook might become a lot better soon. Here's hoping!
Anyway sorry for the long post. Summary: I've got what is believed to be Rheumatoid Arthritis. I'm on steroids, narcotics, immunosuppression drugs. Generally treatments haven't been very helpful, but the very latest is showing a glimmer of hope.