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greenwood1

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greenwood11
greenwood11

I have had Polymyalgia Rheumatica for 3 yrs i started with 20 pred. when i reached 5 pred it would flare up this happend quite a few times so my GP refered me to see a consultant in Rheumatology he said i needed to come off the pred so he put me on Methotrexate so i can get off the pred not happy with  Methotrexate,can any body tell me if this as happen to them.

 

1 like, 4 replies

4 Replies

  • tina-uk_cwall
    tina-uk_cwall greenwood11

    Posted

    Hello greenwood, no this has not happened to me, but then I have only been treated for PMR since December 2013 (18 months).

    5mgs of pred is hardly high dose levels so the chances of suffering any pred side effect is reduced so I cannot understand why they have been so eager to get you off one drug to put you on another with equal side effects.

    what was his reason for wanting you off preds? What was your reduction method that on more than 1 occasion caused a flare?

    you say that you are not happy with mtx why? And, now you are on mtx what level of preds are you on? Please let us know.

    there are many patients on this forum that have had PMR for well over 5 years and their consultants have not put them on mtx. Equally there are patients who are on both and are happy. However, I can understand how unhappy you are with the situation especially as the consultant appears from what you say to have imposed this medication without any in put from you. Regards, christina 

  • constance.de
    constance.de greenwood11

    Posted

    My story is similar to yours. I have had PMR for over 3 1/3 years.  It started rather more complicated than yours with a much higher dose of pred (there were other complications).  In hospital the got me down to 30 mgs within 2 weeks.  My rheumatologist was never happy with the high dose and recommended Methrotrexate almost straight away.  It made me dreadfully I'll.  Over the years he is still not happy (I am on 6 mgs pred at the moment).  He insisted I try it again - same result!!  

    Having said that, many other people on this site have used it and it has helped to get them off pred.    So, what do you do?  The answer really is "try it and see". - you may be one of the lucky ones.

    Good luck!

  • EileenH
    EileenH greenwood11

    Posted

    If you had reduced to 5mg and were still well just above then your GP wasn't doing things properly. The aim when reducing is to achieve the lowest dose that gives you the same result as the starting dose - if that was 5 or 6 mg then that is where he should have left you for some time. If nothing else, your body has to start producing cortisoll again and it takes a bit of time to sort itself out. You are never reducing reletlessly to zero - you are looking for a low dose.

    That said - how did your GP reduce you? The reduction must be slow once you get to 10mg, for one thing to identify the low dose for maintenance more accurately. You cannot reduce in 2.5mg steps below 10mg - and definitely not 5mg steps. Even 1mg at a time is too much for many people.

    If what you have is PMR then there is no evidence at all that MTX will replace the pred, it may possibly allow you to take a lower dose of pred but you were able to get well into single figures anyway. It has worked for a some people - providing they were able to take it without any side effects. If you are unwell while taking it then why take it? I wouldn't.

    Follow this link

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

    In the first post there are a load of other links. One is the "Bristol paper" which was written to help GPs manage their PMR patients - they reduce 1mg at a time below 10mg. 

    In the replies you will find a very slow reduction plan which has been used by many patients to get well below 10mg to doses that are acceptable to their doctors. I am on 5mg, my rheumatology-trained GP is perfectly happy at that. I've been on pred for just 6 years. After nearly 4 years at above 10mg the entire time my bone density had not changed. I had put on weight in the meantime, I have now lost it, mainly by cutting carbs drastically which has also got my cholesterol back to normal range (that is the most effective dietary means of reducing cholesterol by the way) and I used that scheme to reduce 1mg at a time from 15mg down this final time - before I had never managed below 9mg.

  • pauline36422
    pauline36422 greenwood11

    Posted

    same time as i started.   at 20 mg, got downe to 1mg in jan but had a bit of aflare.

    so went to 2 mg  with  pain  but managable  stayed at 2 pain eventualy subsided,

    so mid may    went down to 1,5 mg  still no pain so  i will go down gradually to 1 in a couple of weeks hopefully  i wont have any pain.  but i must say   just spent 5 weeks in turkey  so think the   heat  did help

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