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PMR - an alternative to steroids

Posted , 6 users are following.

Suanne
Suanne

A week after my 60th birthday in October my GP quickly diagnosed PMR. By this time I could not sleep at night and the burning in my arms and legs was so intense I could not raise my arms and had most of the typical PMR symptoms.

The GP gave me a hefty steroid injection and overnight all my symptoms went away as if by magic (thereby confirming his diagnosis) but I became hysterical and 'psychotic' on steroids. After only two weeks my symptoms returned with a vengeance so I was prescribed 40mg prednisalone but became quickly pyschotic again.

After two visits to the rheumatologist I have been prescribed methotrexate and folic acid as I can't tolerate steroids. I believe this a treatment for Rheumatoid arthritis for which I have no markers. After 7 weeks my ESR is down as is my PCR and white cell count, showing less inflammation, the general malaise has vanished, I have got my mind back though I still have some pain in my shoulders but each week that is receding.

I have been worried about the toxic effects of methotrexate but am assured by my GP that it is less 'dirty' than steroids and seem to be tolerating it well.

At the moment I am also taking 5mg prednisalone and also the antinflammatory Celebrex.

Yesterday I saw the rheumatologist who has advised me to start weaning off steroids and all the rest so that in a few weeks I will only be taking methotrexate and folic acid.

I would advise anyone to explore the methotrexate route. My rheumatologist was reluctant to prescribe as he thinks it does not work with PMR but my symptoms are classic and it is working. His get-out yesterday was to say that it did not seem to be Rheumatoid arthritis but a 'reactive arthritis' (PMR?!). I am thinking that he is collecting statistics to write a paper and I do not fit! My GP has assured me it [i:c95f5154ba]is[/i:c95f5154ba] PMR.

For me this seems to have started with a shocking cough/cold virus from last year - May to July - followed by shingles (July) and then PMR (Sept/Oct). This has followed a couple of extremely stressful years.

Lastly I also take the herbal remedy Milkthistle to support my liver with the methotrexate and this helps a lot.

I am dismayed to read about how long some of you are still suffering but

am so glad to have found this site and to be in contact with you all as I have felt very alone with this.

What have your families been like ? and how have your doctors managed you ? smile

1 like, 3 replies

3 Replies

  • mrs_k
    mrs_k

    Posted

    Suanne

    There are some support groups operating in the UK for PMR-GCA UK.

    These are currently located in Southend, Essex, and Tayside and others ones are on the process of being formed.

    If you care to email pmrfighters@yahoo.co.uk we can help you locate your nearest support group.

    This site, Patients Experience is so necessary to help us all in exchanging views and learning from other people's experiences about this long neglected disease for which currently there is no known cause and no known cure. Sone Reasearch is currently in progress led by a Professor Dasgupta in Essex and a Dr S Mackie based in Leeds.

    These groups are in the process of forming a national organisation.

  • Guest
    Guest

    Posted

    I am interested in your experience with methotrexate and wondering whether to try and change from prednislone. I have had quite a number of side affects from prednislone and wonder whether methotrexate is a better alternative
  • dragon55
    dragon55 Suanne

    Posted

    methotrexate is a horrible drug which weakens the immune system, I have seen young people die of pneumonia because they have taken it...be careful with any infection you get.
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