Hydroxychloroquine for PMR instead of prednisolone?

Posted , 10 users are following.

Came off prednisolone last November. Flared up again in January.

New Rhuematologist gave intramuscular Depo-Medrone, have now had another injection but relief only for 4 weeks this time. He has suggested, because I am fighting going back on Pred,  Hydroxychloroquine.

My question is has anyone tried this?

Haven't been on the site for ages but it was my bible for 3 years. 

DJ

0 likes, 29 replies

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  • Posted

    I took plaquinil for 3 months+-

    did no good except made me VERY light sensitive. Actually had to wear sunglasses inside.

    • Posted

      I have been on hydrocloroquine (400mgs daily) since May as well as 5 mgs of Prednisone. Recently went to 2.5 mgs of pred as well as hydrocloraquine. So far so good. I will come off pred the end of September and just take the hydrocloraquine. I know that you have to have your eyes checked often also. Not sure how not taking the pred will make me feel but my rhumy wants me to try it. Good luck to you.
  • Posted

    I began taking 400mg Plaquenil in March 2016. (Diagnosed with PMR in March 2015).  

    After a couple of weeks taking the Plaquenil, I developed horrific ringing in my ears to the point it kept me awake at night (more than usual sleep disruption). My rheumy prescribed it to help get me off the pred.  I was at 5 or 6mg at the time.  

    I Googled the Plaquenil and found in rare circumstances it causes the ear ringing. Rheumy did not want me to stop taking it so I cut my dose to 200mg a day and am now down to 2.5mg pred. 

    I still have mild ear ringing from time to time but it's tolerable. 

    I do believe sticking with it has helped the PMR inflammation, though stressful situations will still flip me back into a flare of sorts.  I'm retiring from my very stressful job at the end of the year.  I'm staying on the 2.5 Pred with 200mg Plaquenil daily till the first of the year when Rheumy wants me to get weaned off the pred all together.  She says the Plaquenil should be built up in my system enough by then to help me make that change.  

    Fingers crossed.  

    • Posted

      Thanks for your reply, very interesting about it aiding the Pred.

      I have bad tinitus (ringing in the ears) anyway so have noted that possible side effect.

      No one it seems is taking Hyroxyc (Plaquenil) on its own in place of Pred. Sounds as though your rhuemy knows what she is talking about.

      Best of luck.

      DJ

  • Posted

    I have been doing my own shots of Depo-Medrone weekly. But this summer my arms have been so sore
    • Posted

      Are you taking it for PMR?

      What dosage?

      My arms and hands have been sore, numb and tingly which I never experience when on Pred.

      DJ

  • Posted

    I started on plaquenil (Hydroxychloroquine) 6 weeks ago at the behest of my rheumy... I have had dreadful diarrhea for a month, which seems to be abating thank goodness. It seems to be working! I feel really well at the moment, however, it coincided with an increase in pred (back up to 7.5mg from 5mg) and I cleaned up my diet significantly at the same time.
    • Posted

      When will this trial be over so you can move on to the other med which is supposed to be helpful?

    • Posted

      I go onto Tocilizumab in about 8 weeks. Jumping through the hoops so I don't have to pay for it out of my own pocket.

      I can't believe how good I'm feeling right now - I could take on the world! lol

    • Posted

      Did your Dr say why he wanted you to take it as well as Pred?

      My Dr wanted it in place of Pred.

      Tricky to know which drug is making you feel great which is probably going from 5 to 7.5mg and nothing to do with  Hydroxyc. 

      DJ

    • Posted

      Sorry for my tardy response, I must have missed your reply!

      My Dr wants me to take plaquenil as a prerequisite to going on Tocilizumab - here in Australia I have to have been on plaquenil for 3 months and have it not work in order to get access to Tocilizumab!

      The idea is to 'try' and reduce the pred dose as much as possible. He would like me to stop taking it, but I'm not going into this believing I will be stopping, just reducing. I'm also on Methotrexate, so I'm not sure where that fits in with his new 'plan' !

  • Posted

    It is not recommended for PMR by the top experts - if you go to this post:

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

    and then click on the 2015 Recommendations for the Management of Polymyalgia rheumatica - ACR/EULAR and look at Recommendation 7. There is absolutely no good evidence for it even helping as a steroid sparer let alone dealing with PMR on its own. If it did, they'd use it. 

    Pred remains the only reliable way of managing PMR - if you want to try other DMARDs it is up to you but they all come with their own side effects and downsides and no guarantee they will do anything to help the PMR.  If there is any doubt it is PMR they also may be worth trying in case it is another inflammatory arthritis such as RA.

    But Pred used carefully and properly works well for many of us with few side effects.

    • Posted

      I could not agree with you more, Eileen. From personal experience.

      As an aside, am down to 1 mg. pred, don't think I even need that. Appear to be in complete remission. Lost 40 lbs since remission 10 months ago. So this is my second recovery from PMR. each lasting about 18 months.

      Dan 

    • Posted

      Shhhh - don't say it too loud!!!!!! All the best...

    • Posted

      I've been on holiday and couldn't reply site kept crashing but now home and thanks for your reply plus the link which I have read quite thoroughly.

      So glad you are still on the site with your knowledge and advice.

      I have decided there is no point in introducing the new drug (Hydroxychloroquine). I do wonder if the Rhuemy queries PMR even though he put it in the letter to the GP and wants to try this drug for another inflammatory condition.

      Blood tests ESR and CRP show not a great deal of inflammation and no RA. 

      My symptoms are severe neck pain and tingling with numbness in the hands. Worse at night but helped by wearing wrist splints.

      Not carpel tunnel as had steroid injection in wrist which did not help.

      I am surviving, so far, on 4 hourly paracetamol or co codamol. 

      So far I am not as bad, yet, as when I flared up the first time in January but my neck is waring and mobility/hips not as bad. 

      No mood swings yet, thats when I am certain the PMR is back. 

      Seem to be writing too much but thanks for being there.

      DJ

      I wish I had stayed on 1mg pred and not been in a hurry to get off the drug. You are right to say a low dose is easily tolerated.

      The heat 

       

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