RA Group Message

​Lately I have been trying to learn medical reasons why I have RA, and the more I read and write down and keep track of what everything is, from an antigen to t-cells to seronegative to nodules to blood tests to medications and benefits and side effects, the more defensless and uneducated I feel. I have never kept track or requested copies of my blood tests. Tomorrow I see my Rheumatologist for the first time in 3 months, and I am going to request them. She will only have them as far back as last year about this time. Records from my previous rheumatologist are lost. I remember my last rheumatologist has said my Rh factor was -653. I still do not know what this is or means or what is normal. Not that it really even matters. I was diagnosed with RA in 1991 and was under the care of a rheumatologist from 1991 to 1993. Over those two years, I was given a cortisone shot almost every month along with prescriptions ranging from feldene to plaquinil to prednisone. When my rheumatologist wanted to start me on gold shots and gold pills, I sought the care of a chiropractor. I didn't like how any of these drugs made me feel internally compared to the constant pain I was trying to wrap my mind around physically and mentally everyday. I believe at that time it was probably a good thing I did not have the choice to remain under the care of a rheumatologist. I lost my insurance and had no alternative but to self medicate. So, for 12 years that is what I did. Self medication involved everything from vitamins and minerals to over the counter pain relivers to alcohol and marijuana. Needless to say, there were many, many a day I didn't think I was going to see age 40. In 2004, I began the process of applying for disability. I applied for Medicade because I needed medical proof of my condition, as if my hands, feet, and elbows were not proof enough of what RA can do. I was granted Medicaid in 2005 started seeing the same Rheumatologist who had first diagnosed me. I was given a cortisone shot, sometimes 2 every month and was prescribed prednisone, then methotrexate, and just couldn't deal with the internal problems again. I began Remicaide treatments and had two infusions when I temporially lost medical coverage. I thought I was going to die. By the time my medical coverage was in the process of being reinstated, my rheumatologist had become deathly ill and was forced to discontinue his practice. I paid $100.00 to be seen by the rheumatologist who took over his practice. She wanted to give me 4 cortisone injections in one hand, and 5 in the other. But when she found out I was not fully insured she could do nothing. I never went back. I started seeing my current Rheumatologist in March 2008 which is when I was granted disability and medicare benefits. My first two visits I was given double cortisone injections and she started me on Humira. I tried prednisone and methotrexate for about 2 weeks each again, but I just couldn't deal with the stomach pains and headaches long enough to see any benefits. Instead I just took Aleve. I didn't really feel the full effects of Humira until around August. The swelling in my joints seemed to being going down and my pain level went down a degree or two. Along with Humira, my doctor prescribed Arava in August 2008. I started taking 20 mg a day. I didn't really feel any difference until around the end of October. The swelling in my joints seemed to be gone, but what remains now are fused joints, many a nodule, and a different kind of pain. So what kind of pain is better? No pain for sure, but I do not know any person diagnosed with RA who has little to no pain, even on meds. As of right now, I know I would rather be on Humira than not. I realize this every week before I am supposed to give myself a shot, when the real pain starts to show itself slowly until I get to inject again. Arava is a whole other medication I'm not to sure I want to continue, although it seems kind of late at this point because after ingesting it, stays in your body for 2 years. So back to the more I learn....the possibility that Arava is a human carcinogen (carcinogen refers to any substance, radionuclide or radiation that is an agent directly involved in the promotion of cancer or in the increase of it propagation) not to mention the additional 12 active ingredients of Arava which inclulde polyethylene glycol which is a form of ether, an alcohol, like used in antifreeze; povodone, which is a element of iodine which is in chloruform....I have been asking myself more and more "what should I do?" But, I have to say from my point of view, if you haven't taken Arava yet, don't start. If I would have known I probably wouldn't have taken my first pill. I wish all in this group the best, and thanks for listening (or reading). When I receive copies of my labs I will try and post just for comparison sake. Karen (musiclvr3237)