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i do not believe Plaquenil has been formally tried (ie clinical trial) for ME, and it seems to me that the ME experts do not feel it's going to help us as a patient population I have been taking Plaquenil for a year -not for my ME/CFS, but as part of my Lyme protocole. I had to take him to and from a rheumatologist at Johns Hopkins and he was put on plaquenil and it put him into remission. is there anything that works similar to plaquenil with out the associated eye issue, or that may work better? Clinical and serological comparison of 17 chronic progressive systemic sclerosis (PSS) and 17 CREST syndrome patients matched for sex, age, and disease duration. You must log in or register to reply here.
Carol F: CREST Syndrome I feel so alone right now and it would be nice to talk with someone who understands what I am going through.
We had lost several family and friends in the second half of the preceding year, and then had the heartbreak of losing our beloved family dog at the start of December. He's been fully functioning living a full life now for 10 years.
Did nothing. I'm thinking about trying it because my brother came down with a very serious auto immune disease CREST. These were the same things I thought it helped, when I had started it.Kati, I was wondering how you are doing now?
By early 2016 my CREST syndrome was in remission and I was feeling great. All rights reserved. Jenny I have been on plaquenil for a pre-existing conditon- for the last 15 years. Find something else.Interesting I was following the microphygic logic and end up with this drug for I tried it for a while. Since he's had success with it and I figure we are genetically very similar I was thinking about giving it a go.
About 4 or so years ago, a doctor changed my anxiety meds to Paxil, which caused an almost constant burning sensation in my spinal... View answer.
Ann Rheum Dis. (Got sick with ME/CFS since Nov 2008) If I was to stop plaquenil today, I believe I would much worse than what I am right now- They also use plaquenil in cases of lyme disease. This thread is nearly 5 years old by the way.Yeah I see is old but some get well then relapse and comeback but what got them into remission does not work anymore. JavaScript is disabled.
Laura Are you still on the plaquenil?
Jah, how long have you been on plaque nil? As a reminder it will only work if taken over the long term. While it is a good drug, it is a good drug for what it's indicated for and CREST syndrome, lupus, Sjogrens and other auto-immune conditions will benefit from it. I'm thinking about trying it because my brother came down with a very serious auto immune disease CREST. I try to keep a positive attitude which seems to keep my health good. I also feel like I am going through this alone. I stopped Plaquenil eons ago prior to Cytokine testing and haven't needed to get back on it. I have just , accidentally, found that tonic water has completely removed my pain from Lyme ME.
Although I have read that this only happens to be 3 to 4 % of users, I am now one of those. I had to take him to and from a rheumatologist at Johns Hopkins and he was put on plaquenil and it put him into remission. MD. I noticed it has contributed to lessen my level of pain without doubt. My brother was also on it 1 1/2 years.
At first I really did not think much of it since I had had a three herniated disc cervical injury and thought it could have been from that. Would love to hear any updates you have regarding effects of plaquenil. For the last two years my hands and feet have been going numb. Thanks!
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I guess we all respond differently to different meds/treatments due to the myriad of ME subsets.
The study is created by eHealthMe based on reports (from sources including the FDA) of 230,343 people who take Paxil and Plaquenil, and is updated regularly.Patients can bring a copy of the report to their healthcare provider to ensure that all drug risks and benefits are fully discussed and understood.
I had strep throat and scarlet fever many times in childhood until my tonsils were removed.
Would love to hear any updates you have regarding effects of plaquenil. 1984 Dec; 43 (6):794–801. I was blind in one day on July 24th, same year.