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New here. Recently diagnosed with polymyalgia.

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karen48559
karen48559

Hello, I have been diagnosed with polymyalgia 4 weeks or so ago. Symptoms had been creeping on for several months and got so bad eventually I got my gp involved. Despite bloods coming back clear, he felt polymyalgia was the cause. I was given prednisalone 40 mgs. Within 24hrs I could walk, climb stairs, dress without pain. It was remarkable. After one week the dose was reduced to 35mgs as I was pretty hyperactive and experiencing several bouts of arythmia and palpitations a day. Although he didn't know of these symptoms as a side effect of the drug, he decided it was the way to go. The palpitations all but disappeared within 3 days as did the hyper feeling. He then asked me to reduce to 20mgs. Suddenly the muscle and joint pain returns. I put myself up to 25mgs to see if there was any improvement but to no avail and as each day passes it gets a bit worse. I'm not due to see him until next week, but I'm wondering if he has reduced too quickly. Consensus of advice appears to be that very slowly wins the race. Would be grateful to hear your thoughts

0 likes, 32 replies

32 Replies

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  • tony80950
    tony80950 karen48559

    Posted

    In all likelyhood, yes, you reduced too much too soon.  I've had pmr for 2 years now and have tried several reductions, first a big one like you and then 5mg per month, again too much too soon.  I now reduce by 1mg every month and am at 17 right now. It seems to be hit and miss but slow and low is the best for me and for a lot of people I have been in contact with.  Good luck

    Tony

    • karen48559
      karen48559 tony80950

      Posted

      Hi and thank you for replying so quickly. I must admit I was just a wee bit overwhelmed when he put me on 8 tablets at the beginning. Compared to what I've read and heard from other sufferers, it seemed huge. However, I felt like a seventeen year old within 24 hours. No pain at all, it was phenomenal. I was literally bouncing off the walls. In retrospect I was really quite manic on 8 and although I don't think he would have reduced so quickly or by so much had I not started with the palpatations which were really freaking me out. I'm taking my dose as I speak and have gone back up to 6. I was pain free then. Fingers crossed the heart doesn't start it's skippity beats again.

      I'm hoping you are continuing to make progress. 

      Karen 

    • tony80950
      tony80950

      Posted

      We have all been through this.  Everyone is different, with the side effects and the rate of deductions, but, as I have found over the past 2 years, we are all alike.  Just listen to your body and reduce as your body tells you.  Good luck.

      Tony

  • ptolemy
    ptolemy karen48559

    Posted

    Hi Karen, I am sorry you are in such pain. For PMR it is normal to start at 15mg and possibly 20mg. This should have a pretty incredible improvement in days if not hours. At 40mg you may feel much better, but other things also react to steroids at that sort of dosage, it seems that PMR will react at the much lower dosage. On the other hand if it is PMR when reducing you should not try and reduce too quickly, ten per cent max is the rule of thumb. You have reduced much too fast it seems. Go back to where you felt OK and then reduce more slowly once you feel stabilised. You need to get the inflammation under control. 
    • karen48559
      karen48559 ptolemy

      Posted

      Good morning ptolemy. Nice to chat with everyone. Seems to be a really caring and helpful community here.

      I thought as you say the reduction was too high. What strikes me is that everyone who has responded seems to "be in control" of how they dose? Or am I reading it wrong and they have been following Dr's orders? I felt absolutely bazzinga on 8 even though I was freaking out at the dosage. My poor Graham didn't know what was happening smile From a lethargic, creaking, groaning 56 year old wife wo couldn't fasten her shoes to a teenager running around at 50mph. He got up to use the loo one night waking me in the process, when he got back to go to bed I'd got up, made the bed, opened the curtains and was making coffee for us. It was 4.15am! 6 tablets were also fine pain wise but by then the palpatations had set in. So this morning I'm taking 6. Lets see how it goes. xx

    • ptolemy
      ptolemy karen48559

      Posted

      Karen I am not sure we are that we are all that in control!  Most of us can give you our comments as we have had problems along the way too. A side effect of steroids can be to become hyper, others say they have started cleaning the house in the middle of the night.
  • old_nanna
    old_nanna karen48559

    Posted

    well karen , sorry to hear youhave joined the club ,its a long hawl , but there isa light at the end of the tunnel  just go easy on that pred. and follow doc's orders , my sugestion is ,build up your imune system and eat properly , i think thats what got me through it , i got off the prednisone after 2 years , i was told to start with i would be on it for life , but im very stubborn lol dont like being tied down to pills , i wanted a cure not just relief , good luck 
    • ptolemy
      ptolemy old_nanna

      Posted

      I agree it is important to eat properly, including anti inflammatory foods and foods that include calcium, vit D, magnesium, potassium etc as steroids can drain people of these. It is not a good idea to try and boost the immune system though as it was the immune system turning on the body that caused the auto immune problem in the first place and the steroids are taken to reduce the immune system to cope with it. The downside of course is that you can be more susceptible to catching bugs theoretically. 
    • karen48559
      karen48559 old_nanna

      Posted

      Hello old nana. Thank you for getting back to me. I have been watching how I eat very carefully and am taking suppliments already. 

      I too don't like popping pills. I've always been proud of the fact that I'd reached the grand old age of 56 and only needed one small water tablet a day. Poly, however is a different matter and although I'm wary of steroids as I know of the long term side effects, I'm happy to take however many I need to be able to function. Good to hear you are now free of them and hoping your life is now more confortable.

    • karen48559
      karen48559 ptolemy

      Posted

      I'm taking Vit D 400 iu, Magnesium 600mg, 1500mg of Adcal and a multi vitamin which is low in the above but has the B range as well as others. I am however, not taking potassium. Must have a look at that one.  
    • ptolemy
      ptolemy karen48559

      Posted

      Hi Karen, look at the foods high in potassium too, as boosting these up is a good idea rather than taking supplements.
    • EileenH
      EileenH karen48559

      Posted

      Don't supplement potassium unless a blood test shows it is low, it is dangerous to take too much. What you have is more than adequate.
  • erika59785
    erika59785 karen48559

    Posted

    I would agree with Tony, I mg a month is the way to go.  I have been able to reduce from 20 mg from January.....now down to 12 mg.  I did have a very painful RA/PMR flare recently when I had to go up to 20 mg, but now down to 15 mg and slowly reduce again to 12 mg.

    • karen48559
      karen48559 erika59785

      Posted

      Did you do the upping and downing yourself? Or was this on Dr's instructions erika? 
    • erika59785
      erika59785 karen48559

      Posted

      Karen, no --- I just felt I needed a larger amount for the pain and not well feeling.  20 mg helped right away.....and I am going back to 15 and then 14 mg because I feel better.

      No use talking to a GP.....I have done it before and he guided me the wrong way by prescribing too large amount.  GP's, RA doctors don't  know HOW I FEEL and how much prednisone is going to help.

      I learned this through this WONDERFUL AND INFORMATIVE

      WEBSITE.

      Erika

       

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