Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi to everybody here I am new but not new to the problems of RA. diagnosed at the age of 4 I went cripple for months at a time, however in the years since I have been lucky because the attacks have been few and not too severe. In the last couple of years though it is getting worst with more swollen joints more often. The worst I find is what I have to give up doing now. I can't seem to be able to sit around and watch tv all day. I like to sew, knit, crochet and play the piano but I can't seem to be able to do any of it now and that is as bad as the pain. it takes away meaning in your life I find anyway, I don't know how anybody else feels, I am not taking any meds for it and I will try to stay off them as long as possible though lately it is very tempting. I am 47 now and I have diabetes, I walk alot which seems to help but my arms are the worst, I would like to learn as much as I can about RA. I consider myself lucky that the attacks aren't all the time and I get times when I can do things I want to do. I am sure there is alot worst than I am and I have no right to complain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Hi Nina, Welcome to the group, but sorry that you have so many health problems. This is a very supportive bunch of people, and a and , our moderators, keep us educated about RA and other autoimmune diseases. I am on Enbrel, and it's working very well to keep my RA in check. I'm also on Bextra, which helps out a lot, too. As I recall, one of our members applied to get Enbrel through Medicare. Turned out that it would still be a considerable amount of money out of his pocket, so that he still could not afford it. Maybe he'll see this and speak up. Let us know how it goes. Sue On Tuesday, March 15, 2005, at 03:51 PM, Nina wrote: > > The doc wants to put me on Enbrel. I have applied to get Medicare to > pay > for it. Can't possibly afford it otherwise. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: JANE > Nina, welcome to the group. I work in Dallas and live east of Dallas. Looking forward to getting to know you! Thanks for the welcome! I'm abut 90 miles North of Dallas, almost in Oklahoma. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: Sue > Welcome to the group, but sorry that you have so many health problems. This is a very supportive bunch of people, and a and , our moderators, keep us educated about RA and other autoimmune diseases. Thanks for the welcome! Every time I go to the rheumatologist I expect the other shoe to drop. Seems like every time I go, they add a new diagnosis. Now he's talking Lupus, though the tests do not show positive (yet). He's talking " mixed connective tissue disease " since so many of my diseases overlap. > I am on Enbrel, and it's working very well to keep my RA in check. I'm also on Bextra, which helps out a lot, too. I have two major problems that keep me from getting relief. One is the primary biliary cirrhosis (autoimmune which destroys the bile ducts) and I am allergic to NSAIDs (break me out in hives from head to foot). So my poor doctors just stand there and scratch their heads and say they aren't sure what to do. > As I recall, one of our members applied to get Enbrel through Medicare. Turned out that it would still be a considerable amount of money out of his pocket, so that he still could not afford it. Maybe he'll see this and speak up. My daughter has a young friend who could not get it through Medicare, but gets it free from the manufacturer. So I have asked the Enbrel people to include an application to get it through them, in case the Medicare doesn't pan out. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Hi Nina, welcome to the group, glad your here. I'm sorry about your dx, and the difficulties your having. I hope that the Medicare comes in for you, and they can get you on Enbrel. I have heard many good things about Enbrel. I live in OK, so not too far from you. I love animals too, would have them all if I could. You take care, and know that I'm here for you, hugs Tawny --- In , " Nina " <ncampbell@t...> wrote: > > Hello, I'm new to the group as of this morning. I was recently diagnosed > with RA. In addition I have Sjogren's Syndrome, Primary Biliary Cirrhosis, > Fibro, COPD and possibly Lupus (no positive blood test yet, though the doc > thinks I have it). > > The doc wants to put me on Enbrel. I have applied to get Medicare to pay > for it. Can't possibly afford it otherwise. He was thinking of giving me > Methotrexate, but because of the PBC (autoimmune liver disease) he is > concerned about the effects on my liver. Currently I take Plaquenil, > Prednisone and Darvocet. > > I am 53, married for 34 years and have one daughter. I live in North Texas > in the country and have many animals (9 dogs and a bunch of farm critters). > > Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and that it puts your RA in remission. Sue On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote: > > My daughter has a young friend who could not get it through Medicare, > but gets it free from the manufacturer. So I have asked the Enbrel > people to include an application to get it through them, in case the > Medicare doesn't pan out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 ----- Original Message ----- From: Sue > I'm glad you have a backup plan, Nina. Hope you can soon try Enbrel and that it puts your RA in remission. Sue When I still worked, my boss said I was like a boy scout, always prepared for anything. LOL Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 I'd certainly like to know how she got the Enbrel from the manufacturer. I've looked for ways, but haven't found any. It would certainly be a blessing for a few of us. Dennis > On Wednesday, March 16, 2005, at 01:36 PM, Nina wrote: >> >> My daughter has a young friend who could not get it through Medicare, >> but gets it free from the manufacturer. So I have asked the Enbrel >> people to include an application to get it through them, in case the >> Medicare doesn't pan out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Hi, Nina. I am new to the group, too. I have scleroderma, sjorgrens, pulmonary hypertension. I was diagnosis about 5 years ago. I have ulcers on my fingers and i also had to have the tip of my middle right hand finger cut off. I am 59 years old, married 40 years this year with 4 children and 5 grandchildren. Does anyone in this group have scleroderma. Carolyn JANE <janeatregis@...> wrote: Nina, welcome to the group. I work in Dallas and live east of Dallas. Looking forward to getting to know you! Jane --- In , " Nina " wrote: > > Hello, I'm new to the group as of this morning. I was recently diagnosed > with RA. In addition I have Sjogren's Syndrome, Primary Biliary Cirrhosis, > Fibro, COPD and possibly Lupus (no positive blood test yet, though the doc > thinks I have it). > > The doc wants to put me on Enbrel. I have applied to get Medicare to pay > for it. Can't possibly afford it otherwise. He was thinking of giving me > Methotrexate, but because of the PBC (autoimmune liver disease) he is > concerned about the effects on my liver. Currently I take Plaquenil, > Prednisone and Darvocet. > > I am 53, married for 34 years and have one daughter. I live in North Texas > in the country and have many animals (9 dogs and a bunch of farm critters). > > Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 ----- Original Message ----- From: Carolyn Gullifer > Hi, Nina. I am new to the group, too. I have scleroderma, sjorgrens, pulmonary hypertension. I was diagnosis about 5 years ago. I have ulcers on my fingers and i also had to have the tip of my middle right hand finger cut off. I am 59 years old, married 40 years this year with 4 children and 5 grandchildren. Does anyone in this group have scleroderma. Carolyn Thanks for the warm welcome from you and everyone! Scleroderma is one AI I have missed (so far). I am half Cherokee/Choctaw and I have read there are more cases of schleroderma in Choctaw women than any other group. So I'm always waiting for that other shoe to drop. Nina Quote Link to comment Share on other sites More sharing options...
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