I am taking MTX to help me lower my steroids. I started in July 2015, had to come off after about three doses as liver readings were up. I restarted and after a few weeks I was feeling much better and was able to hoover upstairs, which is a thing I hadn't been able to do since before pmr. Then just before Christmas I got a chest infection, I had to come off MTX again for 3 weeks. I stayed on 14.5 mg pred. After a week things started hurting again and I started stiffening up. this has continued and I'm not sure if I am breathless, which I know can be a side effect of MTX. I seem to get so very weak at times and it is such an effort to get upstairs I have to sit and rest when I get there. I think I am breathless but know I can make myself feel like that. When I am occupied at times I don't have time to give it a thought and don't notice, so would I always seem breathless if it was the MTX? I don't want to have to come off it if it might work as an alternative might be worse for side effects. Maybe it wasn't working at all and it was just the steroids, but now I am below the level I can cope with. I am down to 13.5. I see my rheumatologist next week and don't want to say MTX isn't working if it is or might.

14 Replies

  • HI

    Methotrexate is one of a group of drugs known as DMARDs or disease modifying anti-rheumatic drugs. It is supposed to alter (lower) the body's requirement for prednisone, which is the current drug listed for treating PMR. Methotrexate works for people with rheumatic diseases, but is considered 'off-label' for treating PMR.

    It comes with its own list of potential side-effects, as does prednisone.

    It is a personal decision and, I hope, an informed decision as to whether or not you wish to take on both sets of side-effects or stick with the pred.

    Personally I tried plaquenil ( another, older DMARD ) for a year and it had no benefit.

    It was then suggested that I try methotrexate, by the rheumatologist. I had a look at the potential side-effects and decided, for myself, to stick with prednisone.

    I do not know of any proper studies currently being done to compare treatment of PMR with pred alone vs pred and DMARDs. PMR has been considered 'a disease of the elderly' , and in my opinion as a not quite elderly, does not get the respect and funding it deserves. Most of what I know about the disease and handling it on a day-to-day basis I learned from this forum.

    I wish you luck with your upcoming Rheumy appt. I was sent back to my GP when I declined the methotrexate. Doing just fine with him.



  • I would like to just stay on pred but they don't want us to, especially after two years at over 10mg apparently.

  • See my reply to rochyandzeus's comment too.

    I spent a long time on above 10mg - and I'm quite sure it was I was trying to reduce in too big steps. I know a lot of people who were above 10mg for more than 2 years - and their rheumies didn't have a problem with it.

    But 2 years is hardly any time - I'd ask to discuss it with another doctor. A GP is fine if they are sensible. The trouble comes when you haven't got a sensible GP and you end up back at rheumatology again.

  • There were 3 studies, all small, using pred and MTX in PMR. One showed it helped, one showed it didn't and one didn't come to a conclusion. On balance I'd say that was hardly overwhelming evidence one way or the other! The guidelines and review articles about the management of PMR all say that pred is the mainstay of management and a few actually say that there is no hard evidence for using MTX.

    We had a few ladies on another forum who were "threatened" with MTX and were very unhappy about it. They bargained with their rheumies that if they could reduce their pred dose on their own, using the "Dead slow" approach or something very similar, they needn't try MTX. All of them succeeded by reducing in very small steps. Some people just can't cope with even 10% reductions but many doctors expect to get their patients to reduce in the same way as their patients reduce tapers for flares in RA or other illnesses where pred is used to manage acute problems like chest infections and asthma.

    And there are patients who don't "just" have PMR - but something that is more like an inflammatory arthritis which DOES respond to a DMARD.

  • I have been told I may have Seronegative arthritis, then inflammatory arthritis, then back to pmr. I just don't know what I have at the moment except my ESR and CRP are low, 5 and 4 2 weeks ago. I know you don't have to have raised markers but they tell me as mine were raised in the beginning they would be now. I was also told what ever it is I have the treatment is the same.

  • "they tell me as mine were raised in the beginning they would be now"

    No, that doesn't follow. There are people whose markers fall with pred and remain low as long as they are on pred - and you are still. They can also lag a long way behind the return of symptoms. But normally, 14.5 mg pred would be managing PMR fairly well - though there are exceptions.

    You've obviously been on MTX for a good 6 months - how long are they saying you need to keep on to decide if it is working for you? Someone with RA wouldn't be left on MTX forever if it wasn't helping, they'd be tried on the next thing on the list - so why should you with whatever it is you have?

  • I was on a few weeks and thought it was working, then got a chest infection and was off for three weeks. I have been back for about 5 weeks but in that time I seem to be getting worse. I am supposed to be down to 10mg next week for my hospital visit but I won't be.

  • If you are getting WORSE then it obviously isn't helping is it. I have to say - I don't see the point of adding in a drug that you have to keep stopping because of an infection. It just messes up your body all over again.

    The trouble with PMR is that it can wax and wane all on its own (not sure doctors realise that though) and if you happen to start MTX at the beginning of a good patch it may LOOK as if it is helping.

  • I have seen several rheumy's and each one says it is something different. the last one didn't discuss it with me but sent my Dr a letter saying she thinks it is all osteo arthritis. How she came to that conclusion I have no idea. I have that in my right big toe and the other aches and pains vary as to whether it's my shoulders, my neck, hands. It's always in my hip but I have inflammation there and had a biopsy done but they can't think what to do about it as steroids don't help either.

  • You mean oral steroids? Have they tried an injection? Oral steroids can take months to sort bursitis out. If it is trochanteric or ileopsoas bursitis I think they CAN operate as a last resort.

    No point saying get another opinion is there! Unless you can get to a really good rheumy. Where are you?

  • They have never mentioned bursitis. When I had my biopsy done a junior Dr suggested an injection but the consultant said no as it wouldn't last long and they were even cancelling cancer patients operations and that would be classed as an operation.I can't have a new hip till the inflammation is not there.

  • MTX didn't help me with tapering. It did increase the steroid side effects since it magnifies preds affects, that's why it can help with tapering. I was on it six weeks and gained 20 pounds in that time but couldn't taper. Good luck!!

  • That's interesting - I haven't heard that before! Though it is perfectly logical. I was on Medrol for about 9 months, supposedly more effective than prednisolone or prednisone. Didn't work for me - but I had massive weight gain, mad hair and skin and a dark beard, none of which had been a problem with prednisolone!

    Twenty mg of Medrol one day did not a lot, 15mg of prednisone the next brought the usual PMR miracle!

  • I didn't gain weight the first few weeks but I have now.

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