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I have been diagnosed with polymyalgia

Posted , 15 users are following.

Royall
Royall

Hi. I was diagnosed with polymyalgia two weeks ago and my gp started me on 15 mg steroid tablets doctor said that I would be pain free in 48 hours but I'm not 8 days later and the pain is so much better I am able to get out of bed in the morning get dressed quite quickly not so stiff after sitting, but I still have some pain it has not gone completely. I can't walk fast at the moment. Has it been like this with anyone else ? Doctor is hoping that the pain will be gone when I see him in 3 weeks time !

0 likes, 21 replies

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  • celia14153
    celia14153 Royall

    Posted

    I had to go to 25mgs to get relief, started late May and am only now on 17.5mgs. By and large we find on this Forum that we have to educate our GPS! You sound as if you could benefit with 20mgs dosage to maintain for 4/6

    weeks before starting a slow reduction. That would give you more relief and give the Pred a chance to relieve the inflammation that causes the pain. You could refer your GP to this Forum - he probably already knows it. Pred doesn't take away all pain but offers huge relief!

    • Royall
      Royall celia14153

      Posted

      Thanks for answering . My doctor said that he normally starts people on 20 mg this is the first time that he has started anyone on 15mg . I think that I need to see him again, I dread to think what the side affects of 20 will be like. Will 15 mg eventually work . 
    • celia14153
      celia14153 Royall

      Posted

      I haven't had huge side effects - hair a bit thinner, cheeks a bit fuller, no great fatigue, Adcal for calcium and vit D, haven't put on weight. I'm happy to be reducing, but happier that the pain is by and large controlled and I'm mobile. X

    • EileenH
      EileenH Royall

      Posted

      A study done in italy showed that 75% of patients responded to a starting dose of 12.5mg within a month. Larger people took longer than the smaller ones. So really, if you stayed at 15mg you would find things would improve over time. Most patients want a quick answer.
    • donna25417
      donna25417 Royall

      Posted

      We what doctor says maybe try the 20mg for a month or so and then start decreasing if it helps.  The 15 did take a long time to help months for sure. 
  • donna25417
    donna25417 Royall

    Posted

    Hi Jenny I was diagnosed August 2016 i was put on 15 mg and it never did take the pain away there are so many who where put on 30mg to start and that seemed to work on the pain.  I stuck it out and started decreasing in January 2017 and am now down to 2mg per day with still a bit of stiffness but manageable in the mornings but really hoping to get off totally in a few more months . 
    • Royall
      Royall donna25417

      Posted

      Hi there. I am better then I was I couldn't get up in the morning very easily and I was very stiff after sitting. My doctor said that all the pain should be gone in 48 hours but it wasn't,  have you still got inflammation ? Is that why you still have pain. I hope that you can get off the steroids soon the side affects are awful. 

  • Blockhead
    Blockhead Royall

    Posted

    You may have to up the dose to 20 and split it. Morning 10MG and Night 10MG Ask your Dr. Call his office.

    Good luck.

    • Royall
      Royall Blockhead

      Posted

      Thank you. Yes I think I will have a phone appointment with my doctor on Monday 
  • nick67069
    nick67069 Royall

    Posted

    I started at 15 and it took week or so before the pain was gone. It all depends on how severe the PMR is and how long you had it before you were diagnosed. Most people have some residual pain, but it is manageable. Stiffness in the morning is "normal" and as soon as you get moving it should get better thru the day.  Although you can ask to  increase the dose, one big advantage of starting low is that you have an advantage compared wiht people who have to reduce from 25mg or higher.

    • Royall
      Royall nick67069

      Posted

      Thank you you have given me some hope it has only been 9 days since I started on my tablets. Some days it is worse then others but a lot better then it was . 
  • BettyE
    BettyE Royall

    Posted

    When I was prescribed 30 mgs. the pain relief was almost 100% within four hours but when I had PMR again five years after getting to zero Pred. I was only prescribed 15 and, although there was considerable relief, it was nothing like as fast or as near total as the first time.  Also, this second time it took five years to get to zero. Did the smaller dose have anything to do with the longer time? I don't know.

    Hope, if your doctor is right and the pain has gone in three weeks that he doesn't try to get you to reduce too quickly.  As Celia has said, some doctors need some tactful education. There is no PMR steroid reduction Rule Book that works for everyone. If only!

  • Misha452
    Misha452 Royall

    Posted

    I started on 20 mg. There was major improvement immediately but i have never been pain free. After 18 months I am down to 6 mg and there is still some pain but it is manageable.
  • karenjaninaz
    karenjaninaz Royall

    Posted

    I was started at 15 mg 12/1/15 and got miraculous relief within 2-3 hours. However, we tried to go down too fast at first and and I had to go back up for awhile. I can only tolerate 1/4 mg decrements using snail method but I have minimal transient aches and   

    Have decent functioning. 

    I found in research Vit D enhances pred action so I take 5,000 u a day. Pred causes shortness of breath in my case so I do a balancing act.

  • EileenH
    EileenH Royall

    Posted

    Some people are never totally pain-free - an improvement of about 70% within a week is accepted as good. Some doctors believe that handing over 15mg of pred is all they have to do for a miracle and the patient is returned to their pre-PMR state of health. If only! We do keep trying to tell them not to raise patient's expectations.

    If any of your pain is due to bursitis that may take up to months to fade completely - I had a miracle in under 6 hours for the general muscle pain and stiffness but the hand, foot, hip pain that was due to tendonitis and bursitis took about 5 months to go away. I suppose it must have faded slowly - but one day I suddenly realised it was gone.

    The latest recommended starting dose is the lowest dose that works in the range 12.5 to 25mg - and maybe you might get faster relief with a slightly higher dose. But that means you may have more side effects. It is all a balance.

    And YOU have to do your part - just because you feel better does NOT mean you can go back to your normal level of activity. You have to learn to pace and rest appropriately because your muscles are being attacked by the underlying autoimmune disorder and they remain intolerant of acute exercise. 

    Read my reply to Kathleen in her new thread

    https://patient.info/forums/discuss/living-with-some-pain-and-less-prednisone-good-idea--615906

    and read the links here https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

    Also google "Gorilla in the house by batsgirl" and "the spoon theory by Christina Miseriando" for allegories about living with chronic illness.

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