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pmg

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peter46416
peter46416

I have experienced this condition for over 18 mnths now, and feel I would have been in a terrible situation if not for prednislone. It is managable with this drug and I think I am over the worst. Doctors are not much help as this is a grey area in medicine and at present time not that much is known, My wife and I diagnosed the condition and had to plead with the doctor for a blood test which showed the inflammetry markers confirming we were right and he was wrong. I finally stopped taking the pred and started to try ibprofen here and there. This worked for a while and then had pain at night again, but managed to cope with it. I have been self medicating for a month now taking one or two mil of pred. I am now coping and back to some light weight training as I was an athlete. I participated in olympic freestyle wrestling and weight training for many years, but do not think it had any bearing on the illness, as my mother had a history of reaumatic and arthritic complaints and I believe it to be handed down with the genes. I hope I have been some help to others in the same situation. Regards Peter Jeffery

0 likes, 12 replies

12 Replies

  • tina-uk_cwall
    tina-uk_cwall peter46416

    Posted

    Peter, if you have pain again, you may be experiencing a flare because the bout of pmr had not burnt itself completely. If I am right, the odd ibuprofen will do nothing and instead of taking 1or 2 mgs of preds to need to take a dose that will once again control the inflammation. Then taper from there.  I fear that presently your desire to get of the preds will lead you to be on them for even longer. Regards, tina
    • peter46416
      peter46416 tina-uk_cwall

      Posted

      Hi thanks Tina, sounds like the right advice I will try this. I am feeling a lot better thanks. Not a pleasant experience.
  • ptolemy
    ptolemy peter46416

    Posted

    Peter when you say you self medicated on pred, how did you get hold of it? 
    • peter46416
      peter46416 ptolemy

      Posted

      Yes if you read my article the Doctor realised after the belated blood test and prescribed prednislone, and told me to reduce as I started to feel improvement which I did gradually, but I probably tried to reduce too fast as the Docter asked me to, so I then started to get the pain back. So I have tried 1 or 2 ml a day and it has stabalised my condition. Thanks Regards Peter Jeffery.
    • tina-uk_cwall
      tina-uk_cwall peter46416

      Posted

      Peter, goggle Bristol pmr plan, it will give you an insight to this condition that is an auto immune condition. The auto immune system attacks our large muscles and the fluid in between the joints and this causes huge inflammation, and it is this inflammation that causes the pain and stiffness we refer to as pmr. This condition is not curable and has a mind of its own. Some patients will experience an incident free recovery, but remember when the auto immune condition goes into remission, we still are not cured. The condition is with us forever and of course we all hope that it never rears its ugly head again but it always could do.

      the steroids simply reduce the inflammation that causes the pain, how grateful are we all for that!!? Many patients consider preds to be evil because of their many side effects and some of them can be nasty. However, we will not all be subject to them if any and we have to realise that preds are the lesser of two evils because mass inflammation in the body is also extremely bad for you and there will come a time if you leave inflammation unchecked that we could be extremely ill if not life threatening.

      reda the Bristol plan. It states the gold star treatment plan for this condition and then many of us once we get to 10mgs then follow the dead slow and almost stop reduction plan and only reduce our preds by .5 yes a slow way to reduce but from my experience essential.

      you sound like a very dynamic man who prides himself in keeping his body well tuned and looked after, well, so was I and many many others of us on this site and when this debilitating condition attacks us we simply can't understand why. But we must approach our recovery with as much dedication as we looked after our bodies. 

      In my earlier days I played tennis for my county, I ran and swam and zumbaed and horse rode myself around, there was simply no stopping me. Now at only 54 I have had to calm right down and now I walk a lot and really enjoy it. Everything has its place in our lives and we must adjust to all that is thrown at us. Hopefully we will all recover one day and take up things where they were left off even if we restart these activities with less 'punch'. Regards, tina

       

    • EileenH
      EileenH peter46416

      Posted

      1 or 2mg a day is often enough to manage the day to day inflammation that develops - and it is far safer than using NSAIDs as pain killers which don't work as well and plenty of their own side effects, some of which can be worse than pred.

      There are several people on the forums who have been perfectly happy on 1 or 2 mg and their doctors have insisted it can't be doing anything so they should stop taking it. Within a very short time they had a full blown flare - which once managed with a slightly higher dose then allowed them to go back to 1 or 2mg.

  • molly1957
    molly1957 peter46416

    Posted

    Hi peter I've just recently been diagnosed I like you had read up about this and thought I fitted in with this ,my GP did loads of tests for all the other conditions such as thyroid and rheumatoid arthritis that have similar symptoms and all came back clear she told me the only thing wrong was inflammation was slightly raised and that she was a bit puzzled she said there was a condition called polymyalgia and it could be that but she would have to refer me to a specialist, I was taking naproxen which was literally just taking the edge off things so was desperate to get sorted, anyway I saw the rheumatoigist 3 weeks ago and started 15mg of pred within a day or 2 pain and stiffness had gone I went back yesterday and he has reduced me down to 10 for 6 weeks then hopefully slowly reduce down he said it can take 12 to 18 months to do this and I may have a flare up and need to increase, you are so right about this being a grey area all these professionals seem to differ my rheumatoigist said they don't know what causes it he doesn't think it is genetic as partners are more likely to get it , I've never heard that one before, he said he couldn't rule out infection or virus which I said I had food poisoning last October could it be that and he said I can't say no . Anyway Peter one thing that seems consistent is that this can flare up so you may have to take pred again as ibuprofen is no good long term for this 

    best wishes molly

    • tina-uk_cwall
      tina-uk_cwall molly1957

      Posted

      Hello Molly, partners can get it? That's a new one on me and let's hope there's no truth to that otherwise I'm doomed!!! My husband has been great but there is no way he could go through this and I hope he never does!!!

      you have shown just how opinions regarding this condition differ because for your rheumatologist to think that it only takes 12-18 months for recovery is optimistic to say the least. It is more like 3 -5 years and that's why a slow taper of preds is vital.

      if I may also advise you to look up he Bristol pmr plan. The treatment regime advocated in that paper is considered gold star treatment. I ask ypthis of you because your reduction from 15 to 10 after only 3 weeks is far to fast and too much of a drop. The normal is 15mgs for 6 weeks, 12.5mgs for 6 weeks then 10mgs for up to a year. (My rheumatologist had me on that dose for 6months. Then it's a very slow reduction using the dead slow and almost stop plan. Even with this reduction programme some of us reduce by only .5 

      please consider this tapering programme as it is less severe and with these programmes there is much less chance of a flare.

      regards, tina

    • molly1957
      molly1957 tina-uk_cwall

      Posted

      Thanks Tina I just wish these rheumatoigists would read these forums and work together on this condition I've found more info on here than anywhere else 

      regards molly

    • EileenH
      EileenH tina-uk_cwall

      Posted

      I have no idea what that rheumatologist is talking about - since I do remember reading a study where they had looked at partners who both had PMR because when both partners have something it can suggest an environmental source. They couldn't come to any conclusion that that was signifcant.

      It is known that people with Scandinavian forebears are more likely to develop PMR and GCA. It is rarely (but not never) found in people from the African and Indian continents. Both those suggest a genetic component for susceptibility. It is fairly well accepted that there are likely to be multiple triggers that make the immune system finally go into over drive. If people from a similar regional backgound become partners - down the east cost of England for example, or from somewhere else in Minnesota, it is also very likely that they have a common genetic background. They are also subject to similar environmental triggers for 30-odd years prior to developing PMR.

      He's also in cloud cuckoo land about 12-18 months. About a quarter of patients get off pred in under 2 years, remaining at a higher risk than others of a relapse at a later date. Half take from 4 to 6 years and the rest need pred longer term or even at a low dose for life. German text books say an average of 5 years and that certainly fits with the people I have met in the last 6 years on 3 different forums. My experience is also that doctors who trained in German-speaking countries are far less fixated on getting their patients off pred - you need what you need and for as long as you need it.

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