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Recurrance of PMR

Posted , 6 users are following.

john0707
john0707

I was diagnosed by my doctor 2 years ago as having PMR although it did not show as definate in my bloods. Looking back I had symptoms for several months before a mild fever after which I was absolutelty wiped out.

I took low level steroids for eight months starting at about 8 mg. I felt relatively lucky becuase I had not had it as bad as others. However I am really disapointed as it seems to have returned again after a year symptom free again it is not showing in my bloods but I am being put back on steroids. Is this a common occurance to have a replapse ( and for it not to show in the bloods) and does anyone know if I might have been doing anything to cause it to come back  back?

I am self employed in quite physical work and it had a great impact last time. However there is a feeling that this is the devil I know but would really appreciate knowing others experience as I thought it was behind me and that is not the case and I am not being referred to a specialist to ask questions?

many thanks.

 

0 likes, 7 replies

7 Replies

  • Nefret
    Nefret john0707

    Posted

    About 20% of patients with PMR/GCA never have raised inflammation markers, I am one of them.  In 15 years my markers have never risen from the 2 and 4 (normal for me) readings but in every other way I had all the classical symptoms of both.

    It is very common for a relapse to occur following a mild episode of PMR.  Most of those who have this do say that the second bout is nothing like the first, both in the severity of the symptoms and the duration.

    Most patients with PMR do get referred to a Rheumatologist - particularly those whose symptoms are not completely textbook - because many conditions can mimic PMR and vice versa.  If you think your GP is up to managing a different version of PMR then don't worry about a referral.

    Hope the second lot disappears soon!

    • Chopsie
      Chopsie Nefret

      Posted

      Have you tried an anti inflammatory diet like the Paleo approach? Symptoms may not completely disappear but I'm having done success with it. I also have mild pmr which I've controlled at times with aspirin each day.

      All the best

    • EileenH
      EileenH Chopsie

      Posted

      Between us Nefret and I have probably tried all the dietary approaches - none of them worked. Some people find a diet rich in anti-inflammatory foods helps but no one has reported they can get away without pred altogether - if they don't take pred they still have significant pain and stiffness. I've done it all ways - for 5 years I spent a fortune on a gym to have acqua classes etc - but that was because the doctors wouldn't diagnose it as my bloods were resolutely normal. Normal pain killers did nothing and I never had a day free from pain. Then it hit like a ton of bricks - and I was pretty much housebound and immobile. Pred was a miracle.

      As for using aspirin or ibuprofen: one friend was ordered by her GP to use ibuprofen and 3 days later was in A&E with a gastric bleed. Not trying that way!

    • john0707
      john0707 Nefret

      Posted

      Many thanks for this I didn't realise 20% don't have markers in their blood. Hopefully this relapse will be helped quickly by pred as my first was.
  • EileenH
    EileenH john0707

    Posted

    Nefret has said it all John. Hard luck is all I can really say.

    It may be the same, it may be different - I hope it is as mild as the first lot and you manage with a low dose of pred again. At least this time you have some experience and know what not to do!

    Do keep in touch and let us know how you get on.

    • Chopsie
      Chopsie EileenH

      Posted

      There are examples in the literature of people controlling mild pmr with aspirin and NSAIDs - it does work for some of us. Too many GPS prescribe steroids within days of onset of symptoms without examining any of the environmental factors which might have been contributing to the onset of pmr for us all for years.

      Pmr and the hundreds of other inflammatory diseases we may be susceptible to have roots in genetics and environmental factors. Everyone finds different ways to manage symptoms so all the best to everyone

       I will not post again as my experience seems to be out of place on this forum

    • EileenH
      EileenH Chopsie

      Posted

      One of the criteria for diagnosing PMR is that the symptoms should have been present for several weeks - only then should steroids be used. As you so rightly say, there are factors leading to PMR symptoms which are not deserving of long term prednisolone. However, believe me, the problem most patients seem to meet is not doctors leaping to prescribe pred but a decided unwillingness to do so despite patients being immobile and in great distress with the pain and handicap. Our experience with hundreds of patients on 3 forums is that NSAIDs rarely provide adequate relief in more than very mild PMR - but although mine was fairly mild for 5 years ordinary painkillers did nothing. I merely pointed out that NSAIDs are themselves far from innocent medications either when used long term.

      There may be examples in the literature of successful use of NSAIDs but I haven't read that many - and I have read a lot. Neither has there been any successful identification of environmental factors which trigger the final development of many autoimmune disorders. That there is a genetic susceptibilty is inarguable - but there is no way of changing our genetic heritage. You can hardly say to a patient in a wheelchair and so crippled by pain they cannot leave the house that "It would have been so much better if you were not descended from a Scandinavian genepool" or "what a shame you didn't live the other side of the country from that chemical plant when you were younger" - not that there is any evidence of any particular chemical influence or infection in PMR.

      And when the PMR progresses to GCA - as will happen for about 1 in 5 patients - then there is no choice. You use pred or risk them going blind. I have something between - as do many it is being realised. When I put up with the relatively "mild" PMR symptoms for that first few years did that allow continuing damage to my heart and blood vessels? The long term inflammation has almost certainly put me at increased risk of developing cancer at some later point. 

      I wasn't in any way suggesting your experience was "out of place" - it certainly isn't in terms of a means for some people to help manage their symptoms. I was answering the question you asked. It has been tried - didn't work for us. 

      When people post on this forum advocating non-medicated alternatives their posts are usually transferred to the "Alternative Medicine" section (not by me I hasten to add). Anyone posting on here saying "this worked for me" is welcomed - but you will find we are inclined to question most things. Including the incorrect use of steroids.

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