1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Hydroxychloroquine COMMON BRAND NAME(S): Plaquenil

Posted , 3 users are following.

jeanne333
jeanne333

3 weeks ago my RA prescribed Hydroxychloroquine

COMMON BRAND NAME(S): Plaquenil .. he wanted to try it, to see if it would help me lower my steroids dosage below 20mg .. 2 weeks after I started taking it I had a very bad flare .. I increased steroids to 30mg with minimal relief .. in staid of getting better it seems to be getting worse .. my legs and arm muscles are very weak and very painful plus I'm retaining fluid .. I've had to start using a cane and/or chair walker to get around .. Im wondering if this med was the cause of my flare not the upper respitoury and sinus infection i had 3 weeks befor the flare reared its ugly head .. Has anyone else out there been prescribed this med and if so what was your reactions ..

0 likes, 5 replies

5 Replies

  • jeanne333
    jeanne333

    Posted

    I should add .. because of my stage 4 kidney problems I m on a "very" low sodium diet and I've been limiting my sugar and carbs also .. I've gained 10 pounds in 5 days ..
  • EileenH
    EileenH jeanne333

    Posted

    Muscle weakness is listed as a severe side effect of hydroxychloroquine. Do contact your doctor urgently and discuss your reaction to the drug.

    In my book, anything that starts soon after starting a new drug can be put down to that until proven otherwise. 

    Actually, there is very little evidence that hydroxychloroquine helps reduce pred in PMR. It is actually mentioned in the 2015 Recommendations for the Management of Polymyalgia Rheumatica - a EULAR/ACR collaboration which you will find about halfway down this post:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    In Recommendation 7 it says "Hydroxychloroquine was investigated by a single very low Quality of Evidence retrospective study reporting no benefit regarding relapse rate" 

    It is also advised that the dose be adapted in cases of renal insufficiency. I assume you have been told to have eye checks?

    • jeanne333
      jeanne333 EileenH

      Posted

      I did call my RA's office and reported my serous symtoms. He has not responed as of yet; I'm taking it twice a day and I'm stopping as of tonight. I really thought this flare was the results of the lung /sinus infection I had .. but the flare started 1 week after I started new med and 2 weeks after the lungs/sinus cleared up .. and upping my steroids has had no results at allb.. thanks for yor input
    • jeanne333
      jeanne333 EileenH

      Posted

      Update on Hydroxychloroquine, and my reactions to it. In my last post May 13th. I had guit taking it, as I had all the severe side effects. It has been Hell, so much pain, wobbly legs, extremely swollen legs and ankles and the right leg was covered with a very large hemotoba. After 20 days, I'm finally able to walk a little without cane or walker, but leg and ankles are still badly swollen (yesterday I had to buy a bigger pair of flip-flops, as I couldn't get any of my shoes on and I was leaving the house) It definitely didn't work for me; I m very leary of trying anything else, as the side effects listed, are as bad if not worse than steroids.
    • EileenH
      EileenH jeanne333

      Posted

      I have to say I agree - used properly pred can do the job without serious long term side effects. I've had a fair few side effects but none that I have ever felt were worse than PMR!
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.