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Question about Plaquenil (hydroxychloroquine)

Posted , 7 users are following.

Mrs.Mac-Canada
Mrs.Mac-Canada

Hi all,  I saw my Rhuemy last week and he is concerned about my being up to 9mg of pred  for the past 5 months (from 4mg). I've been on pred for 28 months. Starting decrease to 8mg using DSNS method but notice the difference. It has been a week and it's not getting worse so I think it is withdrawl pain, not flare. Will try week two and see what happens.

My Rhuemy said he'd like me to try Plaquenil along with pred to see if I could decrease easier/faster.

Does anyone have experience with this and if so what dose of pred and plaquenil did you take? Any input would be much appreciated.

Thanks friends😊

Diana🌸

0 likes, 24 replies

24 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey Mrs.Mac-Canada

    Posted

    Hello Diana

    I haven't had experience of Hydoxychloroquine, or in fact any other DMARD.  It is just another drug that is sometimes offered as a steroid-sparing agent when doctors feel that patients aren't reducing their Pred fast enoug (or as fast as they would like them to!!).  However, as you have managed to reduce down as low as 4mg in the past, then I would have thought you would be able to do so again in the not too distant future. Still being around on doses around the 9mg mark after periods around 28 months probably applies to many people.  Are you doing the slow reduction by 1mg or half a mg?  If the former, then perhaps you could give the latter a try?  It is sounding promising that after a week on the present taper towards 8mg your symptoms aren't worsening.

    Hydroxychloroquine is usually prescribed for rheumatoid arthritis and lupus, and often in combination with Methotrexate.  If you do decide to try it, do bear in mind that it can take 3 months or more to notice any benefit.  Apparently there is a rare risk of damage to the retina, so it is advisable to have an eye check with an optician once a year and tell them that you're taking hydroxychoroquine.

    Difficult one, Diana - you can only try it and see.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada MrsO-UK_Surrey

      Posted

      Hi Mrs. O,

      Thanks for the info.  My Dr. did mention it would take about 3 mths to be of benefit. He also told me that you have to take it with at least a full glass of water and remain in an upright position for about 1/2hr to allow the pill to move right into your stomach. He said something in the pill makes it "sticky" and if it settles into your esophagus it can eat a hole through it.  That was really pretty much enough for me to say forget it but I thought I would see what other people had to say on the forum.

      I will not be taking this drug and will continue my decreases at a nice slow pace. Will try the 1/2mg and steady as she goes.

      hugs, Diana🌸

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mrs.Mac-Canada

      Posted

      Diana, the potential "risk" of damage to the esophagus would put me off too!  Would far prefer to continue doing battle with the Pred which has been tried and tested now for so many years.  Many people I know have given the different DMARDs a try - a few have found some initial success in lowering their steroid doses, but most have ended up being back solely on Pred again.  Here's hoping you'll have more success if you do decide to try the half mg route - at the same time helping it along with a not too hectic lifestyle!  
    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I've never heard of that - has he maybe got it mixed up with bisphosphonates? Plaquenil causes gastric irritation in some people but there is no warning about taking it and staying upright that I can find. It does cause sun sensitivity and can damage the retina and those are affected must stop taking it.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Thanks Eileen, 

      You are absolutely right!!  So sorry for misleading people😬.  We talked about me taking a few different meds that day and I really got that one wrong.

      I haven't had a DEXA done since before being diagnosed with PMR. I was told I had osteopenia at that time.  I don't want to take anything unless absolutely necessary.  I do take calcium, Vit D and magnesium daily so hoping that's working.  

      Are you still in China?  

       

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Yes - setting off home tomorrow so I will disappear again for a couple of days wink
    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Slept reasonably well - but it must have been well over 24 hours that we were underway! But home now smile
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, welcome back to you both - bet you've stored up some wonderful memories from that trip.
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