Experiences with Plaquenil?

Discussion in 'Fibromyalgia Main Forum' started by CFS101, Apr 9, 2007.

  1. CFS101

    CFS101 New Member

    I've had CFS since January 2003 with no positive response to many treatments so far. My rheumatologist just prescribed Plaquenil and has high hopes it will do me some good. I was told it's used to treat Malaria but now has off-label use in people with suspected immune deficiencies. My doctor has treated patients with FM and the beginnings of lupus with this drug and has seen good results in many. Does anyone have personal experience with this drug?
  2. Lichu3

    Lichu3 New Member

    People have tried many things on this board but I haven't heard of anyone using plaquenil before if it's just for CFS.

    There is also a lupus board here and they can give you their perspective on plaquenil in terms of side effects etc.
  3. Suzan

    Suzan New Member

    For Psoriatic Arthritus, and it did help him..BUT made him itch like crazy so he had to discontinue it. Please let us know if you find some relief with it!
  4. aquabugs

    aquabugs New Member

    I've been on Plaquenil since 2002 with no problems. It's a drug used for several autoimmune diseases to help modify the course of the disease. It's original use was for malaria as you said. If you haven't already, you should Google "plaquenil" and read about it on RELIABLE medical sites.

    I've never heard of it being used for CFS or FM though. I take it for autoimmune disease to which FM is secondary. FMS is VERY commonly associated with a number of autoimmune diseases.

    Your doctor should have told you, but just in case he didn't....you have to give this drug a lot of time to work. It will not make you feel better right away. It takes several months to build up enough to become effective...they say 6 months or so. It took 5 months for me to notice a difference in my symptoms. So be VERY patient. A lot of people give up too soon because their docs forgot to tell them how long it takes to work.

    I don't know...but it sounds as if your doc is at least entertaining the thought that you may have some autoimmune thing going on and he wants to try Plaquenil to see if it helps.

    Some people have stomach problems when they start taking it, but I never have. Be sure to take it with food.

    Also, there is a very RARE side effect that affects the retinas. Your doc should have sent you to an opthalmologist for clearance before starting the drug AND you should see the opth every six months to be monitored just in case.

    My opth says he has never seen anyone have problems with the drug in his 30-some year career. But have the check ups just in case.

    The good news is that the retina problem is completely reversible just by getting off the drug.

    To make it short here - I have taken the drug for 5 years with no bad effects. Get your eyes thouroughly examined every 6 months, take it with food, and REMEMBER it takes months to see a difference. If it is going to help, you won't notice for quite a number of weeks.

    Good luck!
    Sylvia

    I hope this helps answer your question. :)

    [This Message was Edited on 04/10/2007]
  5. CFS101

    CFS101 New Member

    Thank you for your advice. I was not aware of the potentially long-time it may take the drug to act. I'll keep that in mind and make sure I don't give up prematurely. My primary diagnosis is CFS, however, I do have FM as well. The FM has become more problematic as of late. I had mild pain orginally which is now becoming acute. The doc. had said once that he thought I may have some under the radar immune problem going on - but definitely not Lupus at this point. I've exhausted many of the common CFS prescriptions so we decided to give this a try... just as long as it doesn't do more harm than good! I will check out the Lupus board. Thanks again.
  6. foxglove9922

    foxglove9922 New Member

    Hi CFS101,

    I have been on Plaquenil since the beginning of my illness, CFS almost 6 years ago. Funny how it all started. I was a case of sudden onset and also broke out with a rash on my chest and upper back which turned out to be Sub-acute Cutaneous Lupus Erythmatosis (skin version of Lupus, not Systemic).

    My CFS has remained plateaued for several years now and I have experimented with lowing my Plaquenil dose to see if the SCLE was still a problem. It was,,,,,,so I contine to take Plaquenil.

    Sorry, this is probably of little help to you. I am unaware of Plaquenil being used for CFS/FM only. Make sure to have you eyes checked once a year for a rare side effect of Plaquenil that can cause macular degeneration.

    Wishing you the best,

    Foxglove