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PMR and methotrexate

Posted , 3 users are following.

Guest
Guest

I have had PMR for 18 months now. I started on 15 mgs predisolone, have only ever decreased down to 10 but am now and often up to 14. In an effort to reduce this my consultant 7 weeks ago prescribed 7.5 gms methotrexate and folic acid. I had no quarrel with this as I am usually good at taking medication without any side effects. 2 weeks later I felt extremely unwell - complete exhaustion, breathlessness, stomach and groin and hip pains and severe depression. Sleeping 14 hours a day. At the time I did not associate this with anything. My Doctor and myself after relaying my symptons thought it might be a urinary tract infection as I have suffered from these in the past, but after a course of antibiotics the symptoms still remain. I then saw two doctors at my medical centre and they thought perhaps it was an underactive thyroid - I have had the tests and my thyroid is fine. It was only a week ago that it occurred to me that it might be the methotrexate - so I stopped taking it. Went back to my GP who didn't think it was the methotrexate and referred me the next day to the rheumatologist consultant - he likewise thought it unlikely to be the medication and I have been completely x-rayed all over, numerous blood tests and am awaiting a brain scan. As I was fine 7 weeks ago and leading a normal life I am wondering if anybody out there has had a similar experience. At the moment I am sleeping my life away, living on co-codomol and so tired and useless I can hardly eat a meal all the way through.

Looking at what I have just written, I think i should add self-pity - sorry. Just hope it is the methotrexate and it will wear off.

0 likes, 4 replies

4 Replies

  • mrs_k
    mrs_k

    Posted

    Pim

    There is currently no known cause or cure for PMR and GCA.

    Steroids have been in use since 1949 and the side effects are well documented. Some people suffer from the side-effects and some do not, luckily, so far, I have not come across anyone who has suffered them all.

    Methotrexate is a relatively new drug and is Chemo based.Read the side effects which should be listed in paper that comes with all prescribed tablets. Failing that 'google' it.

    I contemplated methotrexate - but decided no way - but that is a very personal decision to make.

    As neither steroids or methotrexate cure pmr or gca we need research into cause and cure.

    pmrfighters@yahoo.co.uk, are working together with other groups in the UK to set up a National Organisation to heighten awareness of PMR & GCA and to push for more extensive research into cause and cure and to set up more self-help and support groups in the UK.

    Don't apologise to anyone for sefl-pity, pmr and gca, whilst not life threatening, destroy your quality of life and the drugs that alleviate the symptoms, can cause many of the problems, but without these drugs, you would be unable to move and, me with GCA would be blind.

    There are a lot of us out there and more and more contracting pmr - so you are not alone and this is one of the best websites to discuss problems and experiences.

    mrs K

  • Guest
    Guest

    Posted

    Mrs K

    Thank you for your reply. I'm afraid my doctor and consultant still appear to be sticking their heads in the sand dismissing my suggestion that it could be Methotrexate causing my symptoms, even though I have been off if for 5/6 weeks. What I really want to know, and although I have followed your advice about research, is how long does this drug stays in the body after you have ceased taking it. I've looked everywhere to no avail - If I knew there was an end I could be more optimistic.

    One thing I have learnt - I will not submit so easily when offered drugs in the future.

    Over the weekend I noticed a posting in the Medicines Methotrexate where Helen appears to have some of these rotten side effects.

  • mrs_k
    mrs_k

    Posted

    pim

    email me via this site.

    mrs K

  • gillb
    gillb

    Posted

    Hi just catching up on the reading of this web site - am now back to work 18 months later from onset - but at least i am there almost anyway! Get very tired still and only work two full days but I feel good that I am getting back to some normality. The reason I am adding to this discussion is that there is quite a lot of experiences re methotrexate on the Arthritis Care Website - Discussion Forum - Living with arthritis. It may be worth looking at -obviously other drugs and doseage will make a difference but may give you hope and support. Good luck
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