question-starting plaquenil

Discussion in 'Fibromyalgia Main Forum' started by sharie, May 30, 2003.

  1. sharie

    sharie New Member

    Hey everyone,

    I know there was a lot of talk about plaquenil a while back, but I have a hard time following the search messages for some reason.
    I am starting on plaquenil tonight, per rhuem. I have fm and lupus. I thought that this was for the lupus but now I am wondering if this is a drug used for fm too.

    Has anybody had success with plaquenil and is there anything that I should be aware of? I had my eye exam today and got the green light. just curious what I may be in for.Thanks so much, you are all so great!!
  2. sharie

    sharie New Member

    Has anyone else had any experience?

  3. jka

    jka New Member

    i've been on it for 16 yrs for lupus.i have ni idea how it would help fibro.the only side effects to watch out for are your eyes. make sure you get them checked every 6 months. you can get a build up on lens of eyes and go blind.i've had no problems with that.

    kathy c
  4. kimbali

    kimbali New Member

    I've been on plaquenil since last August and after a couple of months it really helped (suspected lupus but no dx, sjogren's and fibro so far). First, I am guessing you are on 400mg? I'd start by taking 200mg in the morning and 200 in the evening, with meals, later after you get used to it you might be able to take two at once. Also, if you try the generic and your stomach gets upset, try the name brand, I have read lots of reports where it makes a difference to some people. I take the generic and nausea hasn't increased beyond what it was, lol. It did kick in for the fatigue from sjogren's...then what my rheumy says is fibro started, and I don't think the plaquenil helps me with that at all. So far I use aleve, some days it works better than others, also trying to exercise daily - to improve the muscles and to sleep better to improve the muscles, what a cycle, huh?! I'm still pretty shell-shocked by this one.

    Hope the plaquenil helps you with both lupus and fibro. I know that nobody really knows why it works, but they do know it works (some have tried going off, only to find out how much they would have progressed without it, and quickly restarted). Of course I'm no doc so take it all with a big grain of sea salt :) but I am convinced I wouldn't be working even part time without the plaquenil.
  5. sharie

    sharie New Member

    Thanks jka and kimbali,

    I had my eye exam the day I started the plaquenil. I will be going back in 3 months so hopefully that goes okay.

    I am taking the generic, 400 a day. What I did do was take 2 pills together at night. Boy did I pay for that. Last night at 3AM I woke up with the worst cramps ever. My stomach is still not right. So thanks for that info about 1 in am and 1 in pm. I think I will ge trying that and of course with food. My insurance co. filled it generic so I will have to speak to the pharm about getting the brand filled.
    Thanks so much, without your input I probably would have given up with my stomach so bad.

    Any other suggestions are greatly appreciated!!!
  6. kimbali

    kimbali New Member

    Sharie, if it still hurts your stomach, call your health plan and see if they will cover the name brand - you might need your doc to write the rx w/"no generic" or something like that. And remember it can take up to 12 wks to kick in, so don't give up on it :) Hope it helps you!
  7. KathiM

    KathiM New Member

    Hi Sharie....
    I was started on Plaquenil about 75 days ago....I was very apprehensive at first but decided to go for it.... I did the eye test and got the green light as you.
    As you know it takes a while to build up in the system/blood. My first week to 10 days I developed little bumps on my head but they went away and to be honest I dont know if to blame it on the Plaquenil or not. After being on it 2 weeks I definately felt better and by the third week even a little more better !!! On the 28th day I started breaking out with a HOT.... horriffic RED rash from the wrist to my shoulder on both arms........Rheumy
    stopped me for a few days and then decided to have me try it again and with one pill the rash worsened and I got extremely sick. I was sent immediately and they did a core biopsy of my arms and it was definately a reaction to the Plaquenil. Needless to say.......I can not take Plaquenil..
    I did correspond with another gal and she had the same reaction as I did and she even emailed me a picture that had been taken of her arms and it was identical to mine.
    I am not telling you this to scare you ....only to inform you......I have spoken to many people who have been on it for a long time and do great. There is evidently a few of us that have weird reactions and I am DEFINATELY one of them.
    I have fibro and suspected something else "Lupus"........
    The second rheumy now wants me to try DHEA for 12 weeks and see how I do. 50 mg 2 X day.....there has been a study done and it has shown marvelous results for Lupus patients so........I just started it a few days ago.
    good luck