Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 My rheumatologist has tripled the amt of plaquenil I am taking. ;-( There are some medications I have to take - like thyroid, and plaquenil has keeped connective tissue disease under control... but now she is worried about it flaring, again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Hi - My internist diagnosed me with lupus. My rheumy told me she thought I might have lupus, but it is looking more like 'overlap' she said - mixed connective tissue disease. I have a very high anti-RNP antibody and the anti-sm (specific for lupus) was only borderline...So I guess the answer is, not sure. Regardless, the plaquenil is for the joint inflammation and sun-sensitive rash, the rheum. explained. It made a huge difference for the stabbing pain when I was on 800 mg a day. But you can't stay on that dose, so then I went back to 400 mg. Now she wants to up it to 600 mg - not triple it, as I misunderstood her! Whew - that would have been an awful lot of plaquenil! Plaquenil can be hard on the retina - or their is a risk of that, anyway. It is an anti- malarial, which can help with Rhematoid Arthritis and lupus and related connective tissue disease. You ahve to go to the opthamaologist once every 6 months to be checked. I have to make an appointment. It does not seem to help with fatigue. I have a lot of problems with fatigue still. You might ask him about it, Lea. I sure wish you would feel better too!! Love, M > > Dearest Molly: > > Do you have lupus because many women are put on Plaquenil when they have > this condition? I do have lupus; however my doctors have never prescribed > this drug. I'm wondering if this drug could help me. Most all of us have > mixed connective tissue disease and if this drug is helping you, it might > help others. > > I'm really suffering from fatigue and depression, I just have no energy > except in the morning. My rheumatologist will be doing a bone scan soon and > I will ask him about this drug. He is not one for using many drugs, he took > me off Prednisone and I'm glad because it causes bone loss and makes me want > to eat everything in sight. To be honest I felt better while on Prednisone. > > Honey, I hope that you get well soon....love always........Lea > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``` > > Triple plaquenil > > > > My rheumatologist has tripled the amt of plaquenil I am taking. ;-( > > There are some medications I have to take - like thyroid, and plaquenil > > has keeped > > connective tissue disease under control... > > but now she is worried about it flaring, again. > > > > > > > > > > > > > > > > > > Opinions expressed are NOT meant to take the place of advice given by > > licensed health care professionals. Consult your physician or licensed > > health care professional before commencing any medical treatment. > > > > " Do not let either the medical authorities or the politicians mislead you. > > Find out what the facts are, and make your own decisions about how to live > > a happy life and how to work for a better world. " - Linus ing, > > two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Molly do you lose hair on plaquenil? I started it when I thouhgt I had lupus and was tired of feeling like crap, but I got nervous about losing my hair as that was one of the side effects it freaked me out. I stopped taking it and flushed it all down the toilet when I got married. I never looked back and did not take it ever again. Of course I did not have as many things poiniting to me having lupus. I only had an elevated ANA test that eventually after my explant has resolved to normal and all the weird symptoms went away too so I just figured it was a fluke and never did have a real connective tissue disease. I would watch those labs if I was you over time because eventually those tests may just turn negative again. I hope for your sake they do. I just wasn't comfortable with taking those meds. They scared me. I really never liked taking any meds at all but I did take pain meds when I was in allot of pain. Hugs, In , " MollyBloom54 " <mollyb54@b...> wrote: > > Hi - My internist diagnosed me with lupus. My rheumy told me she thought I might have > lupus, but it is looking more like 'overlap' she said - mixed connective tissue disease. > I have a very high anti-RNP antibody and the anti-sm (specific for lupus) was only > borderline...So I guess the answer is, not sure. > > Regardless, the plaquenil is for the joint inflammation and sun-sensitive rash, the rheum. > explained. It made a huge difference for the stabbing pain when I was on 800 mg a day. > But you can't stay on that dose, so then I went back to 400 mg. Now she wants to up it to > 600 mg - not triple it, as I misunderstood her! Whew - that would have been an awful lot > of plaquenil! > > Plaquenil can be hard on the retina - or their is a risk of that, anyway. It is an anti- > malarial, which can help with Rhematoid Arthritis and lupus and related connective tissue > disease. You ahve to go to the opthamaologist once every 6 months to be checked. > I have to make an appointment. > > It does not seem to help with fatigue. I have a lot of problems with fatigue still. > > You might ask him about it, Lea. I sure wish you would feel better too!! > > Love, > > M > > > > > Dearest Molly: > > > > Do you have lupus because many women are put on Plaquenil when they have > > this condition? I do have lupus; however my doctors have never prescribed > > this drug. I'm wondering if this drug could help me. Most all of us have > > mixed connective tissue disease and if this drug is helping you, it might > > help others. > > > > I'm really suffering from fatigue and depression, I just have no energy > > except in the morning. My rheumatologist will be doing a bone scan soon and > > I will ask him about this drug. He is not one for using many drugs, he took > > me off Prednisone and I'm glad because it causes bone loss and makes me want > > to eat everything in sight. To be honest I felt better while on Prednisone. > > > > Honey, I hope that you get well soon....love always........Lea > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``` > > > > Triple plaquenil > > > > > > > My rheumatologist has tripled the amt of plaquenil I am taking. ;-( > > > There are some medications I have to take - like thyroid, and plaquenil > > > has keeped > > > connective tissue disease under control... > > > but now she is worried about it flaring, again. > > > > > > > > > > > > > > > > > > > > > > > > > > > Opinions expressed are NOT meant to take the place of advice given by > > > licensed health care professionals. Consult your physician or licensed > > > health care professional before commencing any medical treatment. > > > > > > " Do not let either the medical authorities or the politicians mislead you. > > > Find out what the facts are, and make your own decisions about how to live > > > a happy life and how to work for a better world. " - Linus ing, > > > two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) > > > > > > Quote Link to comment Share on other sites More sharing options...
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