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judy93591
judy93591

i was diagnosed about 2 months ago with PMR, after undergoing tests to rule out more serious things. After diagnosis, Dr had me read up on it, and my symptoms fit the bill exactly.  The cortisone riot injection and began Pred, 10mg AM and PM, gave me about 75%relief by the next day. Then about 3 weeks Dr began a weaning, 1mg per week in PM.  I then developed severe left hip pain, could hardly walk, again!  Injection, good again !  Now, 2 weeks, severe right hip pain!  Dr put me back up to 6mg PM, still on 10 mg AM. I had been SO active, line dance, walking 4-5 miles a day, now, hard to grocery shop or go up and down stairs. Tired, depressed, no one has heard of this, weight gain, puffy, blotches on lower arms!  I am 73, white female.  I would love to hear from others and how they deal, and that I have something to look forward to?  I don't know if Dr has cut me back to soon? Or exactly where to turn?  Thank you for any replies, Judy, USA

1 like, 17 replies

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  • ptolemy
    ptolemy judy93591

    Posted

    I am so sorry you are feeling so rotten Judy. It does sound like you have been cutting down too fast. The aim of the steroids is to control the inflammation so you can at least get on with your life. Most people take the entire dose in the morning although some find it helps to split it. Have you had a blood test recently to check your ESR and CRP readings which can show inflammation in the body? I think all of us with PMR have to accept that it is life changing and we need to change how we do things. We need to rest more and stop when we get tired and not try and push ourselves. I think I counted fourteen side effects I got from the steroids. I think the worst in my case is the hot sweats. The arm blotches don't bother me too much as they do not hurt, do yours? Although they do sometimes split and bleed and mess up the sheets! I have cut out gluten and simple carbs, with the occasional slip, to try and reduce any weight gain and also the moon face. I have become a guru on nutrition. I try and pamper myself if feeling low. I have trouble with carrying shopping and I am amazed when I mention it that people help me carry it to the car or lift things for me. I do buy things in much small amounts nowadays though.
  • Guest
    Guest judy93591

    Posted

    Welcome to the forum, Judy! I am also USA. Our UK patients are asleep now but they have great info on pmr..,I am GCA only so will let others help you. Again, welcome, Ann11195
  • lodgerUK_NE
    lodgerUK_NE judy93591

    Posted

    Judy use this link to another thread on this site.  http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 and read all you can.

    Then the Moderator has provided this:

    At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred.

    I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.

    So use that link as well.

    Don't worry, when you have absorbed all you can, come back and ask away.   There is always someone around that can help and there is also a booklet called 'Living with PMR and GCA' which some of your fellow citizens who post on here found useful.  It can be found in the pinned section.

    We have all floundered but now you have found this website, you are in the right place to help you through this journey no-one ever wanted to undertake.

    Keep you chin up.

  • judy93591
    judy93591

    Posted

    Yes, on the inflammation. It was one thing showing up all along in the 2 month progression of tests before diagnosis. Dr has done blood test along the way. There was never ' spot pointing to where there was inflammation'. Dr had recommended the AM/PM schedule. I am a longtime member of TOPS, Take Off Pounds Sensibly, and have maintained my goal weight for 10 years!  I work at it, SOOO, this is another bump in my road. A medical slip at least keeps me from losing the KOPS (keep off pounds sensibly) status I have earned. At least I don't have that to fret about. I just get SO FRUSTRATED, AND ANGRY, then mad at myself, as so many are worse off than I.  Just knowing there are others suffering with this helps. I hope getting others input can help put my mind at ease,,worry wart that I am. The blotch thing I can deal with, also.. They just look horrible, and people ASK what is wrong, all the time!
    • lodgerUK_NE
      lodgerUK_NE judy93591

      Posted

      Judy

      We were typing at the same time.

      Be careful with carbs and others who have managed to control weight, to some extent will be along and it does come off when you are a bit further down the road.

    • judy93591
      judy93591 lodgerUK_NE

      Posted

      Thank you, I replied above to your post, learning the routine here. Nit is encouraging that some of these things resolve when off Pred. But, I think my Dr got a little bit to fast, and caused the return of the hip pain, walking issues!  BOO
    • ptolemy
      ptolemy judy93591

      Posted

      It really pays off to reduce really slowly I have found. The doctors are all mad keen for us to reduce as quickly as possible it seems, because of the steroid side effects, they do not have to put up with the pain of a flare up though. 
    • judy93591
      judy93591 ptolemy

      Posted

      You are so correct. Right now I can hardly walk, again, so phoning pain clinic as soon as they open this AM!  Sure puts a stopper to an active, otherwise healthy person, don't it?  
    • ptolemy
      ptolemy judy93591

      Posted

      I think the real shock was having to say no to things, when in the past I was up for everything. I find I have to plan much more now and know I will not be able to do lots of activities as before. Really frustrating. The trouble is all my friends assume I can carry on as before as I look so well! 
    • EileenH
      EileenH judy93591

      Posted

      From what you say I suspect you have also developed trochanteric bursitis - whilst cortisone injections can have a wonderful effect there, you are limited to the number of injections you can have per year. I found that 6 months at IRO 15mg pred eventually resulted in that inflammation fading and the pain improved. However it has returned at intervals since then, especially when I have been able to reduce the pred dose significantly. It can also be made worse by something called myofascial pain syndrome which causes low back pain and referred pain into the upper legs and groin. Both are often found alongside PMR, both respond to cortisone shots - but will also often improve considerably with something called Bowen therapy or Bowtech which is non-invasive, very gentle and you don't need a doctor's referral. You do have to pay - but if it will help you will know within 3 sessions. If it doesn't change you stop. In the meantime REST helps not only the PMR but also the bursitis which is aggravated by walking and stair climbing. Icing can help a bit and, as I say, eventually the pred will too but the blood supply to the joints is poor so it takes longer. 

      And feeling better because of the pred does NOT mean you can go back to normal life - at least not for the moment! Rest and pacing is just as much part of the management of PMR as the pred - it doesn't do anything about the fatigue and it is up to you to learn to manage that. The pred hasn't "cured" anything - it is managing the symptoms to allow a better quality of life. The rest is up to you.

      Oh yes - and explain to your friends what it means. You must learn to know your limits and stick to them. If your friends don't accept it then they are not true friends - you will learn who are! And you will find new ones - we all have.

    • lodgerUK_NE
      lodgerUK_NE ptolemy

      Posted

      Tell me about it,  I had to cancel for planned holiday trips, ended up in after a year in a  wheelchair.  Changed my life but that was OK.  I had my sight.

      I also found that friends assumed I was well and that was one of my biggest problems.   So when we started up the PMR&GCA North East Support and managed to gain charity status, we applied to Awards for All and got a grant to enable us to make a DVD. We got it.

      We then made a DVD called 'You Are Not Alone' with medics and patients.  No jargon and aimed at pmr and gca people, family, friends and carers.   You would have been amazed at the re-action of those people.  They got it finally.

      This year, we have produced a booklet called 'Living with PMR&GCA' and as we had found a good friend in EileenH, it has been issued to members free of charge and is available for a small sum.

      The pinned section has details.

    • judy93591
      judy93591 ptolemy

      Posted

      This is me, to a T!  I am SO appreciative to have found this forum. When I tell someone what it is, when they ask, it makes me feel 'freaky' for lack of a better word!  The response is "hmmmm, never heard of THAT"!  Me:  "well, I never heard of it either" 
    • judy93591
      judy93591 lodgerUK_NE

      Posted

      Would the CD be available to purchase?  I am in U.S. ? I printed the .pdf info
  • ingo
    ingo judy93591

    Posted

    Hi Judy,  I think your doctor has started cutting your dose too fast.  I am starting to deal with pred reduction.  Was on 20mg for 3 months and cut back to 17.5 about 3 weeks ago.  I noticed a difference for about 2 weeks before feeling pretty normal again.  Wants to keep me on that dose for a month and then taper off another 2.5mg.  After reading everything I can get my hands on about PMR and following this forum, I think this is even a bit much.  I've learned that we are all different as to our response to pred and some of this is trial and error.  Don't be afraid to talk to and question your doctor.  Good luck!
    • EileenH
      EileenH ingo

      Posted

      Do the 2.5 but spread it over a few weeks using the "Dead slow and nearly stop" approach - that'll keep the doc happy and you in less discomfort!
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