Re: Re: no meds - was hives

[Guest guest]

maybe they did give you the wrong dx. Did you have your ra factor and sed rate tested? What kind of symtoms do you have? Are you able to work? Also, what kind of side effects did you experience with your meds? I can't afford much in the way of meds either. I'm on the cheapest stuff there is - injectionable methotrexate - one vial is about $26 and it lasts me about 3 months - I don't inject - I put it in water and drink it. I'm also on 10 mg of prednisone a day - costs me $11.00 per month. The folic acid - 1mg/day - is $10.00 per month. I don't have any insurance. I'm looking into humira - my ra doc says that company is very generous with free meds. If I don't take my meds - I can barely move and am in constant pain. I know I have some changes in my bones these last 3 yrs but it's not disfiguring yet. I did recently get a script for ultracet since I developed carpel tunnel in both hands (right in october, left this past april - am left handed). The pain/ache was so bad - i couldn't sleep. They cost me $1 each so I only take 2 when I can't stand it any more and need to sleep. Helen P. NW Ohio aclavern33@... wrote: I have been off meds as long as a year with no problems. I sometimes wonder if he docs gave me the wrong Dx!! LOL But that is another chapter for another time. I have no damage....and I am not worried. I really can not afford meds....so there is no use worrying over something I can not afford. I did get some free meds like the Humira...but dang...the crap burns like acid and does nothing for me but cause pain!!!! ...So if you are on meds and can't do without them and have money to burn...good for you. But after all the side effects and serious problems I have had with most of this crap!!! I ain't taking them!!! __________________________________________________

[Guest guest]

I feel for you and can understand why you would be against the meds traditionally used for ra. The only side effect I seem to have from the metho is mouth sores which I just upped my b12 and they cleared up. I did have a little loose bowel situation at first but that went away. It also sounds like your docs were negligent too - adding to your frustration. Have they looked into lupus or lyme disease? Metho scares me too but I take the folic acid, don't drink alcohol and have my bloodwork every 3 months. So far - my counts are good. The predisone made my palms and bottoms of my feet itch like crazy for the first 3 weeks. I was warned that this could happen and that it should go away after 3 weeks and it was almost 3 weeks to the day! Thank god that was over. I've also gained 25 lbs - something I don't need - am overweight to begin with. I've also become sensitive to salt intake - feet swell something awful and I get muscle cramps bad.

So i have to be careful with that. I hope that you find your answers and relief . Helen P. NW Ohio Ms radar <aclavern33@...> wrote: I have not clue. My sed rate was over a 100 for over a year. RA factor I have not clue. I have changed rheummies 3 times and working on the 4 one now. I was told it was negative than told it was positive. But of course we all know positive or negative RA factor is not a definative test in diagnosising RA. In the beginning I had pain and swelling my hands had doubled in

size. I also had problems with hand numbness and was DX with carpel tunnel syndrome. I had a terrible family doc that ignorred my swelling and pain complaints as my job was required me to use my hands a lot with lots of very fine motor skills. I had EMG and nerve conduction tests. The showed significant slowing and problems. I waited over a year to have surgery to see if a year of RA treatment would make a different. It did not so I had my dominate hand fixed and left the other alone. The first rhemmy had me on Arava. I did will on it for a year with no problems. Went back to work but did not work any overtime. Everything was fine. That doc moved away. There was no doc for a year. Got a new doc...he freaked that I was on Arava and stopped it immeidately...claiming would send me into liver failure and kill me!! This is where all the trouble started. He started

me on Methotrexate, predisone and folic acid!! Immediately had I GI problems, dizziness, nausea, diarrhea, vomiting, horrible fatigue and headaches. He ignorred my complaints for many months saying all looked great cause of my labwork. Meanwhile I got sicker and sicker!!!! Then I started with a cough and shortness of breath. I asked rheummy about it and he gave me prozac, and sleeping pills and I guess thought I just did not want to work. It got so bad I could not talk and was loosing weight from not being able to eat! I went to see a new PCP. He immediately stopped the MTX cause I had drug induced pneumonitis. As soon as he stopped it all my symptoms went away. I stayed off MTX for 3 months and my sed rate soared!!! He started Enbrel twice a week injections. No problems...I was still on predisone, sleeping pills, prozac and other stuff I am forgeting. I got no

response...so he instisted I go back on MTX but this time injections!! Add to my diarrhea, constant vomiting, nausea, dizziness, headache, fatigue and I got mouth sores, eye sores, genitalia sores and a new med Leukovorin to counter act the side effects. It did nothing!!! I was up to 5 mg of MTX a day and still sick as a dog. It ended my work career and I am out on disability. The side effects were so bad that I could not leave home...the vomiting and diarrhea was embarrassing and depressing. So I had to stop meds for weight loss surgery and afterward I had a none month remission. No meds. AFter that I tried to restart Enbel and it did not work...I started with reactions to Enbrel. Since then I changed rheummies again..the new one said one med at time due to side effects as well as restricts on what meds I can take since having weightloss surgery. I have tried antibiotic therapy...made me vomit. Then plaquinil which made me vomit once..but for the most part does nothing for me! Then added Humira which burns like acid, has dull needles, and makes bad lumps and rashes and does nothing for me either but empty my wallet. MTX is off limits for life due to history of side effects and my GI situation. Many of the other meds I am allergic too. So the most I take is Tylenol, Ultram, Lodine and the occasional darvocet(which in a year I have taken 6 pills maybe). Any med that carries a GI ulcer risk I have to take very carefully and any med that might make me vomit is also an issue. So I am waiting for the next rheummy to move to town. Toni RA, OA and fibro(which I think is a wrong DX) __________________________________________________