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polymyalgia or what?

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sue56198
sue56198

I started having excruciating unfamiliar pain in my left upper back last January. GP prescribed Lyrica and Tramadol. Pain went after 3 weeks, but painful area of skin remained 'numb' like and sensitive as if the nerve endings were exposed. Eventually all symptoms went away until April when the pain returned on my rights side. I had muscle spasms in certain 'vulnerable areas (IBS type abdo pain on right and a muscle that 'spasmd' for no apparent reason since turning 50 ish) a very tender area at back waist level and, again numb like exposed nerve skin at the painful areas. Also pins and needles in my hands.CRP was very raised and slight anaemia.

Specialist diagnosed polymyalgia and put me on 20mg prednisolone. The relief within 2 days was miraculous. My bloods all returned to normal then, when I got down to 12.5 mg pred 3 weeks ago, the pain returned in my left waist area plus the numb sensations. My GP thinks its neuralgia and prescribed amitryptiline. Hasn't done much so far. Am still taking 12.5 mg pred.

Anyone had similar please?

0 likes, 9 replies

9 Replies

  • EileenH
    EileenH sue56198

    Posted

    Yes - I have PMR and had the same sort of relief as you with pred. However, I also suffer from myofascial pain syndrome and that causes me pain similar to what you are describing. Yes, in some ways it is neuralgia in that it is muscles that are causing the pinching of nerves and leading to referred pain. I am told by an orthopaedic specialist who does research in it that is not uncommon to find it alongside PMR. The trigger sports it causes are concentrated areas of the same cytokines that cause the pain and stiffness in PMR. Higher doses of pred often help but as you reduce the dose it often reappears.

    Google it and look at the articles from the Mayo clinic and Cleveland clinics. There is also very good information on a site called spine health which has a video showing you where the worst bits are.

    I used massage/mobilisation therapy and Bowen therapy when I lived in Germany and the UK and here in Italy I have had mobilisation of the trigger spots by both a massage therapist and a physiotherapist, injections into the trigger spot areas and a technique called needling to relax the spasmed muscles in my back.

  • carol16456
    carol16456 sue56198

    Posted

    I was diagnosed with polymialgia in November and your aches and pains are very similar to what I have had over the years . The nerve end pain has always been part of it all .When I was in my 20sand 30s if you had breast pain badly it was recommended to take high doses of vitamin B6 . Which I did for many many years .Then all of a sudden on the radio they started to retract about taking B6 because a lot of woman were complaining of nerve ending pain and they thought B6 could have been the culprit . So I stopped taking it .Am wondering if any one else to B6 in great amounts .I am talking between late 70s and early 90s
  • debra38992
    debra38992 sue56198

    Posted

    Hi Sue my name is Debbie my Dr tells me I have Polymyalgia he wants to start me on 20 mg of pred for two wks then taper down this whole process on predisone will be like 10 months it seems a long time any thoughts?
    • EileenH
      EileenH debra38992

      Posted

      Ten months? No Debra, I'm very sorry to disillusion you but it is far more usual for it to be a minimum of 2 years and for many people it is even longer. So many doctors tell patients it will be months and they end up being upset as it doesn't disappear in that time. In the medicalliterature it is felt that about a quarter of patients get off pred in 2 years or less - but are at a far higher risk of developing a second episode. About half get off pred in up to 4 to 6 years and the rest need far longer, albeit at a lowish dose. As long as the underlying autoimmune disorder that causes the pain and stiffness we call PMR is active you need some pred - all it does is manage the symptoms, it has no effect on the actual disease.

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      This link will take you to a thread where the first post has other links in it. They will provide you with a lot of reliable information about PMR, all approved by doctors, as well as other PMR forums. The final link in the first post is to a paper by top experts in PMR aimed at GPs to help them diagnose and then manage PMR. It includes a recommended taper over 2 years which achieves a flare rate of 1 in 5 rather than the 3 in 5 that the usual tapers used induce. The most common cause of a flare in symptoms is reducing the pred dose too far or too fast for the active disease. You cannot force a reduction - all that will happen is that you will end up back in the same state as at the beginning, and each time it happens it becomes more difficult to get the inflammation back under control.

    • sue56198
      sue56198 debra38992

      Posted

      Hi Debbie, my consultant told me, on diagnosis of PMR that I would need to be on steroids for 18 months. I was doing well, 6 weeks at 20mg, then 6 weeks at 17.5 etc til I had just finished my 6th week on 12.5 mg when the pain returned out of the blue. I immediately went back to 20mg but when I told my GP he said that was too high and stick to 15mg. So I suffered the discomfort for 3weeks and then decided enough is enough and put myself back on 20mg. I shall stay on this for 4 weeks then start the tapering all over again in 2.5 mg stages and hope for the best. So maybe my consultant was being over optimistic when he said 18 months!
    • EileenH
      EileenH sue56198

      Posted

      A lot of people recommend going back to the dose the symptoms returned at plus 5 - if you see what I mean. And then start to reduce in smaller steps once the pain is gone. The smaller the steps the more accurately you identify the point where the dose is just enough to control the symptoms. But taking 6 weeks for the pain to appear sounds more like a good going increase of the disease activity. If that is so then your GP is wrong about not hitting it hard.

      Overoptimistic consultant? Yes - the only people I know who have got off pred in well under 2 years have been men. They often suffer PMR very differently from women. 

  • debra38992
    debra38992 sue56198

    Posted

    Sue did you have any side effects taking predisone?
    • sue56198
      sue56198 debra38992

      Posted

      Yes I suppose so:-Some hot flushes and extra padding around my waist but they are worth suffering for the relief from pain.
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