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

Hydroxychloroquine

Posted , 10 users are following.

Sarac413
Sarac413

Doe anyone know anything about this med or have taken it?? Have gone from 15 mgs of pred to 10 to 7.5 mgs since December when I was diagnosed with pmr. 7.5 was not cutting it and dr upped it back to 10 mgs and also started me on hydroxychloroquine. The hope is to get off of the pred all together. I'm taking both meds for now until my next appt. in July. Has anyone had experience on this med?? Thanks. 

0 likes, 21 replies

21 Replies

  • erika59785
    erika59785 Sarac413

    Posted

    I do, and 400 mg Hydroxychloroquine has made my life better because of the RA factor which I have as well.  I have been on it for 2 months, and I have less PM discomfort.  I am doing okay with 7 1/2 mg.  I am just not quite ready to reduce to 7 mg yet.

    I do the VERY slow method by 1/2 mg each month.  I cannot rush it or I will be in pain.  The adrenals are slow to function again on their own after 7 1/2 mg of prednisone.

     

    • Sarac413
      Sarac413 erika59785

      Posted

      Thank you. The doctor did say it takes a few weeks to start working but I am hopeful. I am also taking 400 mgs per day. I'm glad you are feeling better with it.
    • erika59785
      erika59785 Sarac413

      Posted

      It took about 3-4 weeks when I felt better and less PMR pain.

      I took 200 mg of Hydroxychloroquine for many years until PMR "hit" me.

      Never had a problem with it ----- except the eyes need to be checked yearly.

      It is just lately that I asked for the prescription of 400 mg of plequenil (hydroxychloroquine) when I noticed improvement with PMR and I could taper down prednisone more easily.

      I take the 2 tablets of hydroxychloroquine with dinner at night.  One needs to take in a lot of food, or it could cause stomach upset. 

       

  • jeanne333
    jeanne333 Sarac413

    Posted

    I went on it April 23 and on or about May 10th, I woke up with intense pain and weakness in my legs, arms not so bad. By May 13, I couldn't walk without a cane or walker, plus my legs and ankles were terribly swollen; I also developed a bad bleed under the skin, which ran from my crotch to my knee on the inner right thigh, this ended up almost covering my whole lower leg. I quit taking it on May 13, and I'm slowly getting back to my normal, still have pain, weakness, and swollen ankles, and using a cane and walker. The doctor put me on it, cuz I'm on 20mg prednizone, and he wants me lower. If you research the serious side effects, they are, extreme pain and weakness, swollen ankles and excessive bleeding. So please be aware of this, I've been going thru Hell for almost a month now.
    • Sarac413
      Sarac413 jeanne333

      Posted

      So sorry to hear this. I will keep track of side affects. Feel better and Thank you.
    • jeanne333
      jeanne333 Sarac413

      Posted

      When the pain first started, I of course thought it was a flare, buf it wasn't, it was severe side effects of the Hydroxychloroquine.
  • maid_mariane
    maid_mariane Sarac413

    Posted

    Hi sarac

    Personality you are dropping way to fast and as much as we all want to get off prednisone me more than most, it is not a race.

    I have been on prednisone since August 2015 20mg now at 16.5mg dropping only 0.5mg at a time over 8 weeks with 1-2 months in between to level.

    Please read the posts and you will realize your dropping to fast. Do not take what your GP or Rumi say as gospel do your research before you take anything. Ask online.

    Mariane

  • tina-uk_cwall
    tina-uk_cwall Sarac413

    Posted

    Sarac, I have to ask why your GP feels it's so necessary to add a further drug into the mix at this very very early stage. I read stories from patients who have tried for years to lower their pred dosage without success and at that stage their clinicitians have started trying other drugs but why this early on?

    Also the more standard drop from 15mgs is to go to 12.5mgs, and not to have such a huge dfrop from 15 to 10mgs and now this further huge drop from 10 to 7.5mgs. YOu are reducing far to fast and by far to great a dose.

    Look up the bristol pmr plan, you will see that the recommended treatment plan is 15mgs for 6 weeks, 12.5mgs for 6 weeks the 10mgs for anything up to a year. then a nd only then should you embark on an even slower reduction plan of no more than 1mg per month and in my opinion even that's too much too quickly.

    I was kept on 10mgs for 6 months and now I reduce by .5mgs every 6 weeks. I am now on 5mgs after 2.5 years.

    We all want to get off these drugs but our intake of these drugs is governed by our autoimmune condition and not the other way round. And, furthermore what's the point of getting yourself off of one drug only to put yourself on another, where's the sence in that?

    It also sounds as if your dr needs a lesson in PMR and how to treat it. Most of us will have active PMR for a minimum of 2 years or more whilst some unlucky ones will have it active forever. Look up PMR on this site and you will read all about the condition and that Preds are currently the best treatment for it. All the best, Tina

    • Sarac413
      Sarac413 tina-uk_cwall

      Posted

      She is concerned about being on the Pred for so long- but I see that 5 months really isn't that long., she is hoping that this new med will work for the pain and inflammation and the pred can be stopped., I will look at the Bristol plan you mentioned. Thank you.,
    • tina-uk_cwall
      tina-uk_cwall Sarac413

      Posted

      Sarac, of course there are side effects related to preds, but there are side effects of other drugs too, some a lot worse. What drs need to relise that if you approach the tretment plan to PMR cortrectly with preds then there's less chance of flares, therefore there's less chance that we need to be on the higher doses of preds for long periods and if we reduce through the doses the there is less chance that any side effects will effect us. However, if they push us relentlessly through the doses and we suffer flares as in your case then to treat the flares we have to up the doses, therefore leaving us on the higher pred doses for longer. It's not rocket science!

      Currently the only drug that controils the pain is preds becvause the pain is caused by inflamatioin and the only drug that reduces inflamation is steriods. as a dr they should know that! Regards, Tina

  • pauline36422
    pauline36422 Sarac413

    Posted

    yep anoth gp   not up to scratch   with treating pmr.   its a long road for most of us,   and reducing too  fast  is not the answer to a  quick recovery.   and why do they want to mix and match drugs   when it has been proven  pred is the only answer,   in my opinion mixing only prolongs the process.    stick to a slow slow reduction.there is a formula in this site. for the best reduction. i am doing it with  sucess.  but i reduce   quater mi l at a time   good luck on your recovery
  • FlipDover_Aust
    FlipDover_Aust Sarac413

    Posted

    hmm... you're only 5 months since your diagnosis and you've dropped from 15mg to 7.5mg?

    I'm not surprised it wasn't 'cutting it' !! lol

    Sounds to me that your Dr doesn't really understand either the progression of PMR or pred.

    If in say, a year or two you couldn't get below 20mg I'd be worried..... but that's just my opinion. :-)

     

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      Well, as they say, everyone is different.  It took me about six months to get from 15 to 7 mg.  That being said, it's taken me five more months to get from 7 to 4.  Presumably the last 4 mg will take a year, and only if PMR has gone away by then.  rolleyes
    • erika59785
      erika59785 Anhaga

      Posted

      You say.......5 months to get from 7 to 4......

      I am working on 7 1/2 to get to 7 which is painful.  I think I need to alternate 7 1/2 and 7 for a week or two.....to FINALLY get to 7 straight.

      1/2 mg a month.  I am glad that my Rheumy understands and she is not rushing the reduction.

       

    • maid_mariane
      maid_mariane erika59785

      Posted

      It has taken me 9 months to go from 20mg to just now reducing to 16.5mg over a 8 week taper, only 0.5mg at a time and longer than the drop dead slow. So I'm envious of anyone who is down to 10mg. At my rate it will take me over 4yrs to get to 10mg so count yourself lucky.

      As we say we are all different yet the same.

    • erika59785
      erika59785 maid_mariane

      Posted

      Yes, it can take a long - long time to reduce to a level one is not in uncomfortable pain.  I was advised by my Rheumy to take Tylenol once or twice a day, which has helped.  She says that taking Tylenol in addition is better than NOT reducing prednisone at 0.5 mg a month. She says, it takes about a week to get used to a o.5 mg reduction. I am following her plan. 

       

    • Anhaga
      Anhaga erika59785

      Posted

      Erika, I'm using the dead slow method, which involves a more gradual reduction than simply alternating doses.  Today I took 3.5.  Assuming I feel okay I will take 4 for the next six days, and then take 3.5 again.  Next time I'll wait five days before taking the new dose, reducing the number of days between the new dose, until reaching a tipping point where the number of days between the OLD dose is increased in the same way.  If the first attempt at 3.5 doesn't agree with me, I'll hold off and try again in a couple of weeks.  I've also recently seen a suggestion for people at low doses to actually double the length of the taper, so I assume that would mean two stretches of six days, then two stretches of five days, and so forth, between new doses.  It's almost like continually poking at a sleeping dog, trying to be be really gentle so you don't wake him up, but making sure he's actually alive....
    • erika59785
      erika59785 Anhaga

      Posted

      Thank you -- I will give your more gradual reduction plan a try!

       

    • maid_mariane
      maid_mariane erika59785

      Posted

      Erika

      Please listen to the forum. If i did a o.5mg change without a gradual tapper i would be in pain. GP's &Rumi's are not always right so don't do things on blind faith, listen to your body.

      Mariane

    • Anhaga
      Anhaga erika59785

      Posted

      You can find a copy of this by googling healthunlocked dead slow nearly stop
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.