Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Re: Hives!! Posted by: "Harold Van Tuyl" hvantuyl@... grandpavan1927 Sun Jun 11, 2006 11:22 am (PST) It's your choice to use medications or to endure permanent joint damage. Ihope you make the right choice. God bless.________________ It is choice. Also opinions are like assholes, we all have one and advice is like candy we can take it or leave it but it not a necessity! 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!!!! And quite frankly I am tired of people and there holier than though attitudes telling me what to do. 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!!! PERIOD!!! End of conversation!!! Go wag you finger in someone elses face! Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 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) --- In Rheumatoid Arthritis , Helen <helen050959@...> wrote: > > 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!!! > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Well the first doc that treated me was great. But he was contracted to provide rheummy care to patients at the clinic I go to. Well they had big budgets cuts and wanted to pay him even less. So he ended his contract and went back to his private practice fulltime. It was a 50 mile drive to see him and he did not accept my insurance, so I had to pay for everything out of pocket. This included labs. I tried to stick with him but within 3 months I could not. He was very meticulous in my labwork,which I had every two weeks. He had a wonderful nurse practictioner that always returned calls promptly and each appnt was at least an hour long. So after that there was not care for a year! The really frustrating part is a new rheummy comes to town and you see the him the first time. He is thrilled and tells you I know there is a med combo and my expertise that can make it all better. Then after about six months they get tired of you and start treating you like crap. This has happened twice!!!! As we all know there is a horrible shortage of rheumatologist. I live in a rural area of Texas and medical care is VERY far behind here. So we don't get good docs here and we get mostly forgeign docs trying to get a practice going in this country it appears! Toni --- In Rheumatoid Arthritis , Helen <helen050959@...> wrote: > > 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) > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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