Plaquenil for CFS????

Discussion in 'Fibromyalgia Main Forum' started by busybusymom, Oct 23, 2005.

  1. busybusymom

    busybusymom New Member

    Has anyone's doctor suggested Plaquenil for chronic fatigue syndrome? My rheumy has a couple of times. He says it could help with energy level because it is an immune enhancer. My mother took it for rheumatoid arthritis years ago and thinks it's worth a shot.

    My only concern is the side-effects. Anyone taking it and experiencing any? My mom said she had no problems with it. It seems like everything I take, I experience unnerving side-effects.

    Jennifer
  2. yuckie

    yuckie New Member

    Jennifer,

    I haven't taken it myself but a very close friend swears by it for controling her lupus flares. I have not been diagnosed with lupus but feel sure that I have it along with or instead of CFS/FMS. For this reason, I would love to give it a try. Nausea, that can be managed by increasing the dosage slowly is an initial problem. More troubling is a condition that effects the eyes. I understand that is usually monitored by doing an eye test before starting plaquenil and then periodically while on it. I'd sure try it if my doc would let me. Take care of yourself. Janice
  3. busybusymom

    busybusymom New Member

  4. JLH

    JLH New Member

    I have been on Placquenil for quite a few years for systemic lupus. I have never heard of anyone taking it for CFS.

    I don't know how it could help with your energy level, because it certainly never has with mine!!!!!!!!! In fact, my fatigue is getting worse, almost unbearable.

    There are many side effects possible with it; however, I have never experienced any of them. It takes a while to get in your system and do you any benefit.

    You do have to get your eyes checked yearly, because it does have the potential to do harm to your eyes. Like I said, I have never had any problems--and I do get my yearly checkups.

    I also get routine bloodwork to check my liver function, etc.

    Also, I don't know whether or not I can say it "manages" my lupus flares like someone mentioned that their girlfriend swears it does hers .... because I still continue to have lupus flares while on it - but there are several types of lupus. I have the systemic lupus.

    Hugs,
    Janet
  5. hoodnanny

    hoodnanny New Member

    hello
    i take it and i was given it for rhumathoid arthritis.

    i cannot tell that it does anything for me one way or the other.....i still have the same pain i had. and i have been taking it for a year..it takes sisx to eight months to get into the system.....it doesnt kill the pain and it does not help my fatigue.
  6. jbennett2

    jbennett2 New Member

    I take plaquenil for Lyme. Along with two anti-biotics. I am also more tired than I was before starting treatment.
    And my LLMD told me to have my eyes tested every 6 months.
    That was the first thing he told me to do when I left his office - set up an appointment.
  7. brie

    brie New Member

    I take plaquenil for discoid lupus and for joint pain.Actually I noticed that it helps my flare ups of the lupus.I also have CFS and it hasn't seemed to make a diff. with my energy level which is pretty much zero. Before I could take this drug ; I had to have an eye exam. And I now have to get regular blood work as the drug can affect your liver. Hope this enfo helps.
  8. kalley167

    kalley167 New Member

    I have been taking it since January, the only side effect I had was only in the first three days,I called it the devil pill as I felt like I was on fire. Face was red and chest. But after that I haven't had any side effects. Need to make an eye appt for my check up, but don't notie any difference. I think it helped me with the achiness some and alittle in the energy, but I am still so tired all the time. Husband said he noticed when it started working I didn't complain as much.
  9. CATHYRG

    CATHYRG New Member

    hi, i have taken plaquenilfor about 9 years it is the only prescription drug i take for lupus,shogren's and rheumatoid arthritis. when i first started to take it i told my rheumy after about 2 months that it wasn't helping me. he said to quit taking for a month and see if i could tell the difference. by the 2nd week i truely realized how much the plaquenil helped with my pain.i worked for an eye dr. and the only alarming side effects i am aware of is the possibility of building up to much protein in your eyes and going blind,scary yes,but i have had several docs tell me that with 2 complete eye exams a year including photo's you can eliminate that from happening. i also believe the dosage is more exact now then when they first started prescribing it. i am allergic to most meds annd believe this one is a winner if we have to take prescribed meds.cathy
  10. busybusymom

    busybusymom New Member

    Thanks for sharing your experience with Plaquenil. I did end up getting the rx, but am going to try Effexor (yes, I know this is a bad one for withdrawal effects), so I am going to try one at a time.

    Jennifer