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I was diagnosed with polymyalgia 3 weeks ago

Posted , 11 users are following.

wendy43316
wendy43316

i have been taking 15 mg ofpred, for 2 weeks ,then down to12.5 ,I've got ringing in my ears ,hot sweats and headaches .has any one else had any of these symptoms , 

0 likes, 58 replies

58 Replies

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  • manikki
    manikki wendy43316

    Posted

    I was diagnosed 2 weeks ago tomorrow. I was put on 20mg of pred and will be on that dose for 4 weeks. Within 24 hours most pain was gone, and after another 12 hours ALL pain was gone. I have been pain FREE since. My dr. plans to reduce to 15mg after the 4 weeks of 20mg....and I am nervous that this is big of a jump. He said he has had good luck with only the first jump....then slower after that. I guess I would let my dr know you are still having pain and try to get that gone or  mostly gone before trying to reduce the dosage. So far I have had no side effects....I am diabetic and watch my sugars like a hawk, and so far they are spot on with careful careful eating. So sorry you are having headaches..........good luck to you.
  • FlipDover_Aust
    FlipDover_Aust wendy43316

    Posted

    I agree with the others - you are reducing way too quickly. I've only just got under 12.5mg after nearly a year (I started at 50mg), and I'm struggling with pain returning as I reduce, even after this long.

    It will take much longer than 3 weeks for the pred to really start working and months, if not years, for you to understand this condition.

    I'm really sorry to say but it isn't going to go away quickly and you need to 'manage' the drugs according to your own needs, not necessarily what the Dr tells you.

    I had hot sweats really badly for the first 6 months or so, but they have settled down now and I only get them very occassionally now. As the others have said, watch out for the headaches etc because of the possiblility of GCA.

    • wendy43316
      wendy43316 FlipDover_Aust

      Posted

      I'm trying to do what consultant told me to do .I think I need to call 📱 her at the hospital and see if I can stay on at least 15mg a while longer .has anyone had weight gain on the tablets, that's somthing else icworry about
    • ptolemy
      ptolemy wendy43316

      Posted

      I would definitely give your consultant a call and see if you can stay on 15mg until the inflammation is under control. It should only take a few minutes of her time.

      Weight gain can be a side effect with steroids, I try and eat a good diet, I have cut out simple carbs, I have become a nutrition guru since I was diagnosed and bore my friends silly! On the other hand I would prefer weight gain to the awful pain I was in before steroids. Not everyone gains weight and some people even lose weight. 

    • FlipDover_Aust
      FlipDover_Aust wendy43316

      Posted

      I've put on a decent amount of weight BUT it took over 6 months for me to notice, and interestingly it only started after I started eating crap again after being really, really careful about my food (no processed food/sugar or crap), so you tell me, is it the steroids or the food?

      I stopped watching my diet as I got really depressed - again, was that due to the steroids or PMR?

  • ptolemy
    ptolemy wendy43316

    Posted

    This is what the BRS say about reducing. I think most people with PMR think it is over ambitious, but it is what the doctors read:

    The British Society for Rheumatology guidelines suggests the following method for titrating the dose of prednisone in people with polymyalgia rheumatica:6 

    Initial dose – 15 mg, once daily, for three weeks, followed by;

    12.5 mg, once daily, for three weeks, followed by;

    10 mg, once daily, for four to six weeks, followed by;

    A reduction of 1 mg from the daily dose, every four to eight weeks

    • wendy43316
      wendy43316 ptolemy

      Posted

      That sounds, like, a good reduction plan , if it works. And if that is what they, are recommending they must have had good results, from patients
    • FlipDover_Aust
      FlipDover_Aust wendy43316

      Posted

      Personally I'd go even slower! I'm dropping .5mg every month or so and I still notice it - not in a good way!
  • manikki
    manikki wendy43316

    Posted

    I am actually losing weight....but I am eating BETTER than I ever did, and keeping my sugars  well under control....I just have no appetite since I got PMR.....and at this point I am not complaining as I need to lose about 50 lbs, and may finally now be able to. So I am taking control of my  life now as I NEVER EVER want to go back to that place of so much agony and pain from the PMR. Hopefully with my dr's help and the pred I will never have to revisit that place.....taking it one day at a time.
  • maid_mariane
    maid_mariane wendy43316

    Posted

    I have been on prednisone for 2 weeks and have constant headaches. I got into the Rumi asap to insure it wasn't turning int GCA which it wasn't. Just prednisone side effect. My Rumi told me to split the dose and my headaches are more under control. I take early morning 4-5 am

    then lunch and dinner but I'm on 20 mg and haven't yet started to reduce maybe after I aee my Rumi but that will be week 4.

    I hope this helps

    mariane Toronto

  • Nanduff
    Nanduff wendy43316

    Posted

    I agree with everyone that the reduction you were told to do is too fast...ask for a sed rate test that will tell you if your inflamation is down. If it is still high you cannot reduce the  Pred.   My first round w PMR all the Drs said was 'you have to get that pred'.  I was having a terrible time reducing because it was to fast.  Unfortunately not all Drs are sympathetic to this disease.  I researched constantly and this time ...thanks to this discussion board , I think I will be able to reduce correctly this time.  The higher doses can be reduced quicker. 20mg for 4-6 weeks, then 15mg for the same then 12.5mg then 10.  Once you get to 10 it is a slow go!  Don't rush it.  I would check the Bristol method. Then Eileen has a slow..slow taper schedule to get down from 10 

    i also had headaches for the first 2 weeks and hot flashes. It is settling down down 4 weeks in 

    • EileenH
      EileenH Nanduff

      Posted

      Eileen wink  also recommends the slow slow taper from the beginning of PMR these days - and 1mg at a time is enough from 15mg down to 10mg. When it was first realised that slow reductions helped a lot, it was suggested to get down from 5mg. Then we realised anywhere there is a problem reducing doing it 1mg at a time or even less was better. Then some of us tried it right from the start - and, surprise surprise, it was less uncomfortable for many people too. Lots of people are sensitive enough to reducing the dose that it makes sense to say use small steps from the beginning. In the end it isn't slower because there is far less chance of developing a flare or steroid withdrawal pain and having to go back up a bit to stop the pain.
  • angela43016
    angela43016 wendy43316

    Posted

    Hi Wendy, at least you know you are not alone with this. I have found this group most helpful. The only thing I can say is when I have to up my steroids the hot sweats are really uncomfortable. If you are having headaches as well why not put a call into your Rheumy or your doctor, maybe they could help with this. Good wishes, Ange
    • wendy43316
      wendy43316 angela43016

      Posted

      Hi 👋 there .got to have blood test today , to see if inflammation levels have dropped. Going yo call 📱 rheumatologist tomorrow. I'm going to the gym today, I was going 3 times a week till I got this, so gonna, give it, a try. I don't know if its wise but will give it my best shot
    • EileenH
      EileenH wendy43316

      Posted

      If what you have is PMR then no,  it isn't wise to go to the gym. Nor is most sorts of physiotherapy and you should stick to very gentle stuff with a therapist who is familiar with PMR and the problems associated with it

      In the early stages of PMR you need to rest and be particularly careful about overdoing it to allow your muscles a chance to heal and not create more inflammation for the pred to have to combat. GENTLE exercise in the pool is good but anything more will just leave you hurting more so you think you are having a flare - and confusing the response you are having to the pred. It may be you have responded quite well to pred, confirming to some extent the suspicion of PMR, but if you overdo it and cause more pain the doctor can't know that actually you responded normally but you then overdid things.

    • wendy43316
      wendy43316 EileenH

      Posted

      I'm sure my rheumatologist said light weight bearing exercises. I'I'm going to cut my programs right down and take a gentle approach. I'm going to ask her all my questions when I see her , and I know what it is I have got .
    • EileenH
      EileenH wendy43316

      Posted

      Light weight-bearing exercise means going for a walk - not using all the gym equipment. Particularly programmes.

      Unfortunately the rheumatologists usually believe that putting their patient on pred means they are back to normal - which is NOT the case. Nor have any doctors in practice I have come across had PMR themselves. One former lady GP on another forum has admitted that now she has PMR herself she realises how cruel her insistence that patients should cut their pred dose as fast as possible really was and asks herself now whether 1mg/day here or there is that important compared to quality of life.

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