PLAQUENIL

Discussion in 'Fibromyalgia Main Forum' started by sunshine5050, Aug 28, 2005.

  1. sunshine5050

    sunshine5050 New Member

    HAS ANYONE TRIED PLAQUENIL. I WAS GIVEN THAT FOR MILD LUPUS. THEN THE DOC. SAID I DIDN"T HAVE LUPUS ,BUT THAT I HAD FM. HE TOLD ME TO CONTINUE TAKING THE PLAQUENIL. I DID FOR 3 MONTH BUT I COULDN"T TELL ANY DIFFERENCE IN MY HEALTH.IT WAS ALSO $90 A MONTH.THANKS FOR ANY INFORMATION.

    GOD BLESS
    SUNSHINE
  2. jaltair

    jaltair New Member

    I was also tested with elevated ANA and told that I have "mild lupus", placed on Plaquenil, and took it for two months. Then, went back to the rheumy who told me that the elevated ANA was "probably due to the FMS and not lupus" but told me to keep taking the Plaquenil. He asked me if I noticed any difference in symptoms from taking the Plaquenil, and I told him honestly, "no." He still has me on the Plaquenil, but 1/2 of what he had me on. Now when I'm in his office, he talks about my osteoartritis and wants to know if I'm ready for surgery on my wrist(s) for carpal tunnel. Hum? He never mentions FMS, and when I do, he gets this look of "nothing that can be done" type of bewildered look (not sure if you'll understand what I mean). Anyway, I prefer going to the internist, my regular doc who seems to understand more about FMS than he (the rheumy).
  3. Megumi

    Megumi New Member

    My and sister and I both have lupus, FM and EBV. Her lupus is worse than mine. My FM is worse than hers. Go figure.

    Anyway, she was put on Plaquenil and swore by it. Said it really helped her pain. She even 'tested' it by stopping it and noticed a difference right away. I took it for 6 months but felt no difference. Go figure.

    By the way, did you know that Plaquenil was originally a maleria med? When they noticed the maleria patients with arthritis getting relief from their arthritis, they began experimenting with it. It is now one of the 'main' meds for lupus.

    I think like all these dd's, which affect everyone differently, so do all the meds out for them. It depends on the individual.
  4. aquabugs

    aquabugs New Member

    I'm pretty new here and feel so guilty sometimes for only taking information and not contributing here. I DO know about the drug! I've taken it for four years. My rheumy prescribed it for Primary Sjogren's Syndrome - a "milder cousin" of lupus.

    Plaquenil is a disease modifying drug, meaning that it can make the disease milder. It's given for such AI diseases as lupus, rheumatoid arthritis, and Sjogren's. Somewhere I read that if you have lupus and you begin taking the drug soon after diagnosis, that you have a much less chance of developing serious complications such as with the kidneys. Don't take my word for it though, ask your doc. Do some online research on the drug as well. All the literature says it take about 6 months for the drug to take effect. It has to build up to a certain level in the tissues. For me, it took 8 months before I felt a lot better. It seems that many docs need to do a better job of telling their patients how long it takes for this drug to work.

    For me, it has helped a lot. I get a lot of pain and fatigue from the Sjogren's and the Plaq helps a lot with the pain and did help at first with the fatigue, even though I don't have a lot of positive blood work. Now I have developed fibro and CFS and I cannot say that it has helped with that pain or not. Most of my problem now is the bone-crushing fatigue I have, probably now from CFS. I got a new rheumy a while back who decided I didn't have SJS and took me off Plaq. After several weeks, when I had slowly withdrawn from the drug, much pain came back and I was miserable. Thankfully, my new doc put me right back on the drug and I am slowly beginning to feel better.

    If the doc thinks you need it, it's probably important that you take it. Just give it plenty of time to work before making a decision about whether it helps or not. Two months is not nearly long enough. It is also a very safe drug...there are rare cases of eye problems (very rare according to my opthalmologist) and the usual advice is to be examined by an opth doc every six months to be on the lookout for that. The good news is, IF the eye complication does arise, it is completely reversible by going off Plaq.

    I hope this helps!

    Good luck!
    [This Message was Edited on 08/28/2005]
  5. JLH

    JLH New Member

    I have been on it for years. I have systmic lupus, Sjogren's Syndrome, Raynaud's Sydrome, fibro, cfs, osteoarthritis, and osteoporosis (I just listed all of the problems associated with a Rheumy!).

    To tell you the truth, I can't tell any benefit that I am getting from the Plaquenil -- except possibly what one of the other posters said -- that it may have kept my lupus from progressing any further than what it has! It certainly does not relieve my pain, though!

    Janet


    Edit: My insurance company fills it with the generic--maybe that would be cheaper, if you have to take it.
    [This Message was Edited on 08/28/2005]