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Pain and more pain.

Posted , 9 users are following.

tony09890
tony09890

I've been reducing my prednisone dose by 1.25mg per week for three weeks, because GP now believes I don't have PMR. Each drop resulted in a worsening of whatever it is I've got (pain in wrists, forearms, elbows, shoulder, neck and ribs at the back)., I came down with a rash on torso around this time but GP advised it wasn't connected to prednisone and told me to decrease dose in 2.5 mg steps which I did. Next day I was woken at 1:00 am by excrutiating pain in both forearms, applied hot compresses and pain gradually abated. Saw Gp the next day, his advice was 'hang in there'.next day around the same time again woken by excruciating pain in forearm, four hours later got wife to take me to emergency. Doctors treatment: none, other than 25mg prednisone for five days then reduce to 10 mgs. I'm a bit worried when I drop from 25mgs to 10mgs I''m going to be in a world of pain. Comments?

0 likes, 33 replies

33 Replies

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  • Kassie_beetle
    Kassie_beetle tony09890

    Posted

    Hello Tony

    Sorry to hear you are not doing too well. Tony did the GP give you an alternative diagnosis if he does not think you have PMR? When did you first start on Prednisone and did you respond to the Pred? I find it interesting that the Emergency Doctors increased the prednisone. Now the very important question Do you feel better on the increased dose of Pred? If the answer is yes than one would have to think you do have PMR. I like your GP's treatment regime "hang in there" what is that supposed to mean! If you have pain it needs to be treated. If you have been a regular visitor to the forum you would have seen the advice re coming off Pred. Slow as you go. 

    Is your GP basing his withdrawal of PMR diagnosis on blood tests? Would like to hear back from you with further info. 

    I do hope that we all here on the forum can help support you and help lift your spirits with the advice you get.

    Take care 

    Kathy

  • tavidu
    tavidu tony09890

    Posted

    Hi tony, I have had PMR for 18 months now and I am still on 14mg a day but reducing very slowly due to flares. I agree wholeheartedly with Kassie regarding your doctors comments as he is not the one suffering the pain. I had a similar problem with my own doctor who advised "I don't think you have PMR so reduce to 10mg (from 25mg) in two weeks so that I can test you". After two weeks and my doctor being given details of this website he apologised, admitted I had PMR and has left me to deal with my own dosage to suit the pain. Good luck.
    • ptolemy
      ptolemy lucy82013

      Posted

      PMR = Polymyalgia Rheumatica. You are on a thread which is discussing the symptoms of this condition. It is an autoimmune disease the symptoms of which are excruciating pain in the shoulders and / or hips along with fatigue and flu like symptoms.  The pain can be controlled by taking steroids long term, which have their own problems. They do help to make life tolerable though. PMR is not curable (perhaps one day) but can go into remission after years rather than months. 
    • lucy82013
      lucy82013 ptolemy

      Posted

      Thanks. My consultant in another speciality referred tto my signs and symptoms as being myalgia with some OA.

      I am awaiting a referral but in the meantime m GP has prescribed codeine for the pain.

    • ptolemy
      ptolemy lucy82013

      Posted

      Myalgia just means muscle pain in Greek. It is not really a diagnosis of anything. 
    • lucy82013
      lucy82013 ptolemy

      Posted

      Thats what I thought. You know I felt so terrible today that I fell asleep at the keyboard hence sending the previous message before finishing it. I apologise.

      My anas -anti nuclear antibodies were positive and so was the EBV. I still have not got a diqagnosis yet still in pain and woried about my mobility.

      Lucy.

       

    • Anhaga
      Anhaga lucy82013

      Posted

      Your earlier post is a lovely picture of a nap.
    • lucy82013
      lucy82013

      Posted

      I have been in terrible pain all day. Hope tomorrow is better. I need a miracle. Lucy xxxxxxxx
    • lucy82013
      lucy82013 Anhaga

      Posted

      I have been in terrible pain all day. I hope tomorrow will be better. I need a miracle. Lucy.zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
  • tony09890
    tony09890

    Posted

    I quizzed my GP on reducing by 2.5 mg and he assured me I wouldnt suffer any problems with pain as I didn't have PMR. Two blood tests returned elevated ESR and anaemia, that combined with bi lateral pain in arms convincec him I had it. What convinced him I didn't have it was I still had pain when on the initial 15 mg dose. That and the fact I could get out of a chair without using my arms and I could raise my arms abover shoulder level. I was expecting to recieve some level of pain relief from Docs, but? What I really want to know is what are the likely consequences of dropping from 25mg back down to 10 mg after 5 days. Without an argument I wouldn't expect him to be writing a scripts to bring me down slower.
    • tavidu
      tavidu tony09890

      Posted

      I started off on 15mg a day but still had pai. My doctor had to persuade me to up dosage rather than be in pain and finally after going up to 20mg then 25mg the pain finally went. She left it to me from then on to control my own pain but then she left the practice and the new doctor was not convinced I had PMR until he saw the state of me after two weeks and had logged on to this website then he allowed me to be back in control. Sometimes 15mg (the average dose for PMR) is not enough, control the pain and then slowly reduce.
  • tony09890
    tony09890

    Posted

    Oops, missed a couple of questions/answers. No alternative diagnosis but he did refer me to a Rheumatologist, can't get in until Xmas though. I was due to go on a cruize next Saturday but have had to cancel due to latest events. Feeling a little better, but only took the 25 mg dose this morning. What I have noticed is regardless of dose I feel ok as long as I do absolutely nothing, and I mean nothing. The moment I use my hands/arms I suffer excruciating pain from around 8:pm that night: wrists, forearms, elbows upper arms, neck back and ribs at back. Unfortunately I can only get in around 3- 4 single doses of ibuprofen until they make me ill and panadiene forte does pretty well nothing. And this rash is driving me nuts, sooo itchy...
    • ptolemy
      ptolemy tony09890

      Posted

      Tony are you saying that you are not getting relief at 25mg? If that is the case it may not be PMR. One thing you should not take Ibuprofen and steroids together as they are contra indicative.  Reducing steroids whether you have PMR or not causes steroid withdrawal symptoms. I would have thought such a drop way too much. You can drop in quite large amounts if you have been on pred for just a few days though which is not true in your case. I went to a rheumatologist privately in the end I was in so much pain, he diagnosed PMR. Can you see a dermatologist about the rash? 
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