Rheumatoid Arthritis

Just wondering if others' opinions might be that I am being just plain stupid in how I am handling my RA, although I haven't been able to come up with any alternatives. I am now 62 years old and was diagnosed about 6 years ago after most of a year of the baffling symptoms others have described, etc. I have been on disability for 5 years but on the record it was my back (degenerative arthritis, spinal stenosis, degenerative disc disease, herniated discs, etc) that put me on disability. At the same time the back business was ruining my life, the RA "traveling joint symptoms" started adding to the fun (and I've since wondered if the RA is in my spine as well, but it's not supposed to attack the spine).

Anyway, being as how my father had Non Hodgkins lymphoma, as well as macular degeneration and detached retinas, and my mother had melanoma, I was definitely not interested in any of the RA drugs whose potential side effects include cancer, which leaves out most of them. Especially lymphoma am I eager not to increase my risk for. I early on did a one-dose trial of methotrexate but got so sick for 2 weeks I did not want to take any more. Looking back, I'm not absolutely positive whether it was the drug or maybe a big flare of the RA that hit me, but I thought it was the drug. I tried sulfasalazine for 3 months and it did not bother me at all and I did not feel too bad during that time, but the rheumy said it was not working and wouldn't consider any more of it. She then moved back to India and I had to find a 3rd specialist and start over. He did not take my drug concerns seriously and said ok, fine, suffer along then, you'll come crawling back in a couple years begging for my drugs. That is what he said, so of course I never went back. I do not know if my current state of RA would be considered mild, medium, or what. I live alone with many animals and I do know that it is getting very very difficult for me to care for them and do all the things I did 5 years ago. I would have to say, it is the exhaustion that kills me. At one point about a year and half ago, I was actually sleeping up to 20 hours a day, it was frightening. I would lie down for a nap and wake up the next day. So the GP put me on some big doses of prednisone. I had been on 5 mg. a day and it seemed to really help with the joint business, that is all I was taking for the RA. So now I have been on 20 mg. 3 times a day, except for various reasons it usually does not end up being a full dose (reasons such as, I eat so as not to have an empty stomach for the pred, then I forget to take it! etc). It seemed for the first month or 2, it really made me peppier, but I dont think it is helping as much lately, I get very tired a lot! I have to nap and rest, things I never bothered with in earlier years when I was a dynamo.

As time goes on, I just worry and wonder and mostly just watch as this diseases progresses, and while I think I am luckier than a lot of people with RA because my joints, while painful and my hands are becoming semi-useless, my legs are getting weaker and my back gives me the dickens most of the time with sciatic pains, etc. and of course the RA is in my feet now as well, also my shoulders, wrists, knees and especially my fingers, I am not in total agony joint-wise like a lot of folks seem to be, and while I can see and feel the progression, I'm not in a wheelchair (yet) and am very very active physically, hard though it is. If it werent for the animals, I would have sat down in front of the TV, with the remote, about 5 years ago and probably would not be walking by now. So I think I am better off than a lot with this disease. I just wonder if there isn't something I could be doing to actually treat this thing and maybe slow it down, or have some effect on it, instead of just watching things get worse. I am just not willing to play with the idea of losing my sight, after caring for my Dad who was blind, or giving myself cancer with the pills I put in my mouth, after watching him have it. When I read the drug information that the drug companies put out on the newer RA drugs, it just does not make sense to me to treat a disease like RA with a drug that can give you something even worse, FATAL, even!

ONE of the rheumatologists did sympathize with my concerns and did not blow them off, said my family history was definitely something to consider in the treatment options, but he did not offer any solutions whatsoever and it just seems to boil down to, treat the RA, or don't treat it. It seems like ALL the available helpful drugs wouldn't be deadly or make me deathly sick, but no one, to date, has guided me or offered to sort through the so-called options and find some type of treatment that could help. I have been to a total of 4 rheumatologists (one reason was that I moved) but the only doctor who has shown any real interest in my quality of life and my dilemma has been my GP and he definitely seems to understand about my not wanting to take those drugs. He seems to be trying to find a way to help me feel better. Still, I feel like all I am doing is watching as it gets worse and time rolls on. Also, I know I should not be taking so much pred, I already have a pretty strong case of osteoporosis, and I know all the nasty side effects steroids have. Already my face is swelled to the point where I do not recognize myself in the mirror, and my eyes are so severely puffy that I can't even open them properly for most of the day, they are just slits. Well enough of my whining, I just thought I'd air out my tale of woe to others who know where I'm livin' right now. I have actually never known a real person who had RA, I mean face to face known anyone. And one big thing, maybe the biggest thing, about this disease that I wish someone, ANYONE, would have warned me about, is the absolute, total exhaustion it brings. I complained to all the specialists but they blew it off like it's nothing to whine about, it's not like JOINT DEFORMITY! Well I beg to differ on that. The continual and total fatigue just permeates my life and hangs like a dark cloud over everything I do or try to do and it is the worst part of
RA, to me anyways. I would be very interested to hear anyone's opinion on my situation and the way it is being handled and any suggestions that might be offered as to improving the state of affairs. At times one feels like one is adrift on a raft in the ocean with this disease. There are so few rheumatologists that they dont have time to take a real interest, they just process people through the office, on to the next one, etc. A person is left to their own devices, and I guess that's why so many of us end up with so many questions and uncertainties and needing guidance.