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PMR

Posted , 7 users are following.

gillian_25383
gillian_25383

I have had to stop steroids due to side effects.Today after seeing the rheumatology nurse for counselling am to start methotrexate 15mg once a week.Is anyone else on this regime?

0 likes, 15 replies

15 Replies

  • tina-uk_cwall
    tina-uk_cwall gillian_25383

    Posted

    Hello gillian, will you being taking preds as well as mtx? Regards, tina
    • gillian_25383
      gillian_25383 tina-uk_cwall

      Posted

      Hello Tina,am off steroids due to side effects including huge weight gain;not ideal due to heart attack last year.Also Fourth flare up in 12yrs since diagnosis by rheumatologist aged 45
    • EileenH
      EileenH gillian_25383

      Posted

      Many people have found that cutting carbs drastically has helped them avoid weight gain with pred and in some cases has enabled them to lose weight even though they are still taking pred. I have lost 19kg over the last 2 1/2 years by doing that. I have had PMR for over 10 years, for the first 5 years I was not on pred as I wasn't diagnosed - too young at 52 and with normal bloods! I gained a lot of weight in that time as I couldn't exercise as I had been doing. I didn't gain much weight at first with prednisolone but it did redistribute to the usual pred weight places. When I was switched to Medrol when I moved to Italy the side effects and considerable weight gain started. Both lots of weight have gone since cutting carbs and switching to a form of prednisone (Lodotra, the only alternative in Italy to Medrol). 
    • gillian_25383
      gillian_25383 EileenH

      Posted

      Thanks for the reply.I also had the steroid hump and feeling hungry all the time plus my quality of sleep was rubbish.Amytriptiline 10mg although it does not increase the length of sleep improves its quality
    • EileenH
      EileenH gillian_25383

      Posted

      How long were you on pred and at what dose? The steroid hump is pretty well "normal" I'm afraid but it does go with the weight loss. Cutting carbs does also help with the permanent feeling of hunger because pred changes the way you metabolise carbs - take them out and it removes those associated problems.

       

    • gillian_25383
      gillian_25383 EileenH

      Posted

      Thanks for the info.This time I persevered for 8months but knew cardiologist would not be happy as I was meant to be trying to lose weight and exercise more;not easy when in pain 24/7 once down to 7mg/day.Will give methotrexate a try though have been told to keep on the painkillers as it apparently can take up to 14 weeks before get full effect.
  • EileenH
    EileenH gillian_25383

    Posted

    There are patients who are on both methotrexate and pred, some consultants believe it allows a lower dose of pred to achieve the same effect by using them in combination. There is no real evidence that this is true in the long term however - 3 studies, all small, gave different results: 1 said it helped, 1 said it didn't, 1 didn't know.

    Methotrexate is a drug commonly used in inflammatory arthritides but rarely used on its own for PMR since it hasn't appeared to be effective in PMR, pred is reliably so and therefore usually used. Given the fear many doctors appear to have of pred, if there were good evidence that mtx worked in PMR I would have expected it to be used rather more. 

    I had severe side effects with one form of corticosteroid, methyl prednisolone, which was used at first in Italy for me but as good as none with prednisolone (normally used in the UK) and prednisone (normally used in the US). I was switched to a form of prednisone and all the problems I had with methyl prednisone have resolved: weight gain, skin and hair problems, Cushings syndrome, muscle wasting and a lovely beard amongst others.

    There are trials using toxcilizumab in both PMR and GCA which are looking promising - maybe that is something to discuss with your rheumatologist? If you were to go on to develop GCA, which about 1 in 6 patients with PMR do, then methotrexate would not be enough to avoid the risk of loss of vision and a rethink about pred would be needed. 

    Many of us have suffered pretty horrid side effects but have decided that they are preferable to the pain and disability we suffered with PMR. And in the case of GCA, this is even more applicable. However, I do hope the mtx achieves some improvement in your symptoms.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey gillian_25383

    Posted

    Gillian, I assume that your PMR was diagnosed when everything else had been ruled out, including rheumatoid arthritis?  Aside from the side effects you experienced on steroids, did they at least work well in reducing your pain right down to the very low doses?  Just a thought running through my mind that if Methotrexate does prove successful in reducing all or most of your pain, then perhaps a differential diagnosis is needed.    
    • gillian_25383
      gillian_25383 MrsO-UK_Surrey

      Posted

      Yes they did test for rheumatoid factor when I was 40 but negative.Diagnosed after rheumatologist gave me a prednisone intra muscular injection.Within 48hers I felt brilliant.Was told zi would never get rid of it but would have emissions between flare ups.My man and her mam both had RA so was delighted it seems to have missed me
    • MrsO-UK_Surrey
      MrsO-UK_Surrey gillian_25383

      Posted

      Gillian, if they haven't repeated the blood test for rheumatoid factor then do request it - even if the blood test years ago was negative (and it isn't always reliable), it is quite possible for PMR to morph into rheumatoid arthritis.
    • gillian_25383
      gillian_25383 MrsO-UK_Surrey

      Posted

      Will mention it next time I see the rheumatologist.At least methotrexate is used for both conditions so hopefully either way in about 3mths should be feeling better (touch wood)-24/7 pain is so tiring.Good job I am not a depressive person
    • EileenH
      EileenH gillian_25383

      Posted

      Having a negative rheumatoid factor test doesn't mean you haven't got an inflammatory arthrtitis - it just means you are what is called "sero-negative".

      Methotrexate isn't "used for both conditions" as a substitute for pred - I hope the rheumatologist hasn't given you that impression. It is often tried as what is called a "steroid sparer" - taking a dose of mtx allows the patient to manage on a lower dose of pred because the mtx potentiates the effect of the pred. Of all the many patients I have met on the 3 forums only a couple have been able to stop taking pred while taking mtx and it isn't clear whether that was actually because they didn't have PMR but late onset rheumatoid arthritis - which doesn't respond to pred in the same dramatic way PMR usually does and you describe.

      However - I do hope mtx works for you.

    • gillian_25383
      gillian_25383 EileenH

      Posted

      Thanks and no rheumatologist did not say it would do both options.Will be getting appt in 6wks with nurse and in November for rheumotologist
  • janet08828
    janet08828 gillian_25383

    Posted

    Hello Gillian

    I am injecting 20mg methotrexate once a week.

     I am taking it combined with prednisolone trying to get the pred dose down. The first 6 months or so I was just on prednisolone, then I was taking oral mtx for a couple of years plus prednisolone and now for the past 3 months or so am injecting mtx and still with prednisolone.

     I am not sure what the future plan is except that I am in the process of tapering very slowly at the moment.

    I have not experienced any major side effects with mtx - I do have side effects - breathlessness, racing pulse moments, and all the usual culprits - but it is hard to say whether it is the pred or the mtx or just the GCA itself.

    Be interested to know how you get on with just methotrexate - good luck

     

    • gillian_25383
      gillian_25383 janet08828

      Posted

      Thanks. Glad to hear side effects not too bad for you.Fingers crossed-first dose tonight
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