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How did your PMR start ?

Posted , 32 users are following.

veronica81435
veronica81435

Hi Everyone, I'm just interested how people's PMR started . Just think it maybe would help the medical pros  on here . 

Mines started at the age of 44. Following a virus myopathy .Maybe before this because for six years before this suffered with bad frozen shoulders and hip pain. Thank you for your input 😃

2 likes, 128 replies

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  • rrobinson75
    rrobinson75 veronica81435

    Posted

    My symptoms began slowly last year with soreness in shoulders and neck.  In June of 2015, we took a rode trip and I began having severe pain in my hips, groin and upper thighs. If I sat for longer than a few minutes, I could hardly walk.  I have always been healthy and this was shocking to me! My gp sent me to a rheumatologist and due to my symptoms, thought it was pmr and started me on prednisone 15 mg.  My sed rate was normal but my Crp was elevated.   After a few days on prednisone, my symptoms improved by 90%.  When I tried to reduce from 10mg to 7.5 my pain returned.  My doctor said to go back up to 10mg but that still didn't give me relief.  I am now back up to 15 mg.  I was also started on  Metholtrxate 15 mg once a week but it's too early to tell if this will help.  I know I have a long way to go with this and am curious to f others have had a similar course.
    • veronica81435
      veronica81435 rrobinson75

      Posted

      My rheumatologist thought mine was fibromyalgia for 2 years! Even though I could hardly walk. I had to say give an MIR on my hips cause I'd already had one for my shoulders for the on going frozen shoulders. And even though I said I felt better on steroids after having them for a chest infection . She didn't think anything would show on the MIR so said she would not see me again. Something did show and she would not see me so got GP to re re refer me again.

      Saw a new one and he hit on what was wrong . I had neck pain and shoulder pain for years . So must of been coming on for a while. My rhumatologist is trying to get me down to 10 im on 12 now but am really feeling the pain and stiffness now. 

      Thank you you for your input 

    • rrobinson75
      rrobinson75 veronica81435

      Posted

      It is a long road and a frustrating condition but it helps to hear from others. My rheumatologist said we are going to get to be "good friends", meaning this will take a long time.  It was such a shock to go from being so healthy all my life to this.  Thank you for your comments.
    • Anhaga
      Anhaga veronica81435

      Posted

      Veronica, it is a relief to get the diagnosis at last, isn't it?  But then there is that whole thing about adapting to the medication which helps us.  The magic pill helps us function, but we have to become so careful about everything, balancing the care we need to take because of the PMR (and anything else we might have) and the unwanted effects of pred including trying to get off it!  While I was once upon a time concerned about how to fill my days when I retired I now have this unwanted occupation.
    • veronica81435
      veronica81435 Anhaga

      Posted

      Gosh yes it is ! Your right there I so want to do more then I can do . I over did it at Christmas and came down with a nasty throat infection and only just come off the antibiotics . It's a hard hitting disease .  I've gotten into movies now lol where as before I didn't like too much TV . You have to change your life style which is so frustrating. But least I'm being treated for it now and my meds is up and down .  How long have you had it ? 
    • Anhaga
      Anhaga veronica81435

      Posted

      I actually am not sure how long I have had PMR.  I certainly was in an acute phase, steadily getting worse, for about 14 months before diagnosis in June '15, but now that I know more about the disease and the symptoms I think I'd had a milder form for maybe up to eight years earlier.
  • mphooey
    mphooey veronica81435

    Posted

    Sounds like my experience. I am on 5 mg pred and 10 mg. methotrexate. Can't tell if it's really helping because I keep going to the gym and doing arm exercises and getting sore muscles from that.
    • Anhaga
      Anhaga mphooey

      Posted

      Umm, what do you suppose might be the solution to that dilemma? 😁
    • rrobinson75
      rrobinson75 mphooey

      Posted

      How long have you had PMR and how long have you been taking methotrexate?
    • mphooey
      mphooey rrobinson75

      Posted

      I've had diagnosed PMR since June 2014. Started methotrexate last month (Dec 2015). Before that, seesawing with pred & gabapentin & NSAIDS.
    • rrobinson75
      rrobinson75 mphooey

      Posted

      You are about a year ahead of me. This has been so frustrating. Even on 15 mg, I still feel pain in my shoulders, although better than it was. I am happy to find this forum as I do not know anyone who has this. Kind of a lonely disease!
    • mphooey
      mphooey rrobinson75

      Posted

      Yes, my active skiing/cycling friends just don't understand.
    • EileenH
      EileenH mphooey

      Posted

      Pred and NSAIDs together is a no-no and gabapentin does NOTHING for PMR pain. No wonder you ended up seesawing if they were trying to reduce your pred dose like that. No doubt it was also in steps that were too big for you.

      To be down to 5mg after 15 months is very fast in the general scheme of PMR. It took me the best part of 5 years - I have had PMR for just 11 years now and am happy at 5mg. PMR lasts as long as it lasts. Nothing the doctors have at present will speed up the disease process until it burns out - and until then you use pred to provide a reasonable quality of life. It is curing nothing - just managing the symptoms and YOU have to do your part there as well, by pacing yourself, resting appropriately and avoiding the activities that make the pain worse. That isn't giving in, it is being realistic. The underlying disorder is still active, attacking your muscles and making them intolerant of acute exercise. 

    • veronica81435
      veronica81435 mphooey

      Posted

      just a suggestion ,not go to the gym for a week and see if it gets worse or better . 
    • veronica81435
      veronica81435 mphooey

      Posted

      may I suggest stop going for a week to the gym and see if it gets worse or better 
    • veronica81435
      veronica81435 EileenH

      Posted

      yes gabapentin does do nothing I agree Eileen .. I had that too. I'm trying to get down my preds but having too much pain . Your right with being realistic . There's so much I want to do that I use to but cannot now 😰  thank you for your input .
    • veronica81435
      veronica81435 rrobinson75

      Posted

      yes it is a lonely disease , I have problems making people understand . My father in law is bitchy as I cannot work and my hubby don't stuck up for me with him lol . I swaer one of these days I'm gonna blow up and say something . It is frustrating and slow getting better.  I hope you have some improvement soon . 
    • mphooey
      mphooey Anhaga

      Posted

      Haha. Not going to the gym is not an option. Sedentariness is worse than the activity. I used to be active in my youth (2 years ago) and resolve to stay active now.
    • EileenH
      EileenH mphooey

      Posted

      No-one said stop going - it was a suggestion to identify whether you are overdoing it for the state of your muscles which are affected by an autoimmune disease. And certainly none of us would suggest just sitting, that is poison with PMR. The secret to living well with PMR is to pace yourself and rest appropriately. It means adjusting what you do, not not doing it.
    • Anhaga
      Anhaga veronica81435

      Posted

      Veronica, why are the men in your life so unwilling to understand that you are ill?  Would they read the story called "The Spoons Theory" which you can google.  It was written from the point of view of a person with lupus, but it applies to all of us with auto immune inflammatory diseases.  We look well, but we aren't.  
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