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Methotrexate

Posted , 8 users are following.

shelleysinclair
shelleysinclair

Any comments on switching from Prednisone to methotrexate if after 1 year and reduced doses symptoms are still there. I understood this to be best practise.

0 likes, 17 replies

17 Replies

  • DebbieHurts
    DebbieHurts shelleysinclair

    Posted

    I'm curious about this too.  I've been taking methrotrexate each week for at least a year but still on pred.  My inflammation stays high no matter what I do.

  • tony80950
    tony80950 shelleysinclair

    Posted

    I started the metho about 18 months ago and was doing 20 of the prednisone.  Started with 6- 2.5 mg of the metho once a week and after 6 months doubled the dosage.  Slowly, one mg. a month I have decreased the prednisone and currently am down to 1mg a day.  Will be finished with the prednisone at the end of August, YEAH.  After 3 1/2 years of PMR the lack of energy disappeared about 7 months ago.  The pains, occasional blurred vision, lack of taste and smell have pretty much gone from a 9 to about a 1.5 on the abnormal rating.  I have had to flares, the first one, about 2 months ago was quite devastating and discouraging but I had a 20mg of pred. and a shot and felt much better almost immediately.  The 2nd was a couple of weeks ago, not nearly as bad and went away on its own after 5 days.  I still have arthritic pains in my hands and occasionally other parts of my body but I'll take where I am now over any time in the past 3.5 years.  If you have any further questions about this treatment please don't hesitate to contact me.  It has worked very well for me and I am grateful for methotrexate.

    Good Luck

    Tony

    • EileenH
      EileenH tony80950

      Posted

      You can't really say for sure that it was the methotrexate worked - PMR goes into remission in that sort of time span anyway for many patients.

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, thank you for your input about MTX.  My Rheumy wanted me to take it too, but I refused.
  • Anhaga
    Anhaga shelleysinclair

    Posted

    Surely if mtx were effective it would be first line med rather than pred?
    • EileenH
      EileenH Anhaga

      Posted

      My point exactly. It doesn't work for PMR - it has another function. it works for some and not for others. If it doesn't make you feel ill fair enough - but if the side effects are bad, no.

  • EileenH
    EileenH shelleysinclair

    Posted

    I have no idea who told you this is best practice because it isn't. Methotrexate does not work for PMR, only corticosteroids are fully effective and on offer at present. At some point Actemra may be used but at present is neither approved nor financially viable.

    Methotrexate MAY be used in an attempt to reduce the dose of pred that is effective - it changes the way the body metabolises the pred and often gets more bang for your buck. But that is not certain - everyone is different. But it will not REPLACE pred if you have PMR. It might if you have been misdiagnosed and really have late onset RA. But that is a different matter.

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

    If you go to this post and follow the link to the 2015 Recommendations you will find a recommendation for the use of methotrexate with pred in PMR (Recommendation 7). 

    If you haven't reached zero pred and have symptoms if you reduce too far after a year it is hardly surprising. PMR is a chronic illness and - contrary to what some doctors appear to believe it takes up to 6 years for 75% of patients to get off pred. The rest of us may take even longer. About  a third of patients still need pred at 6 years after diagnosis - and there is a study to show it.

    But I'd be suspicious about your doctor's familiarity with best practice articles - because I've never seen one that suggests that.

    • shelleysinclair
      shelleysinclair EileenH

      Posted

      Hi Eileen. She is a rheumatologist. I woder if we are countries away with different guidelines. I will be seeing her next week and have a lot of questions thanks to all the information from the group. Thank you!
    • EileenH
      EileenH shelleysinclair

      Posted

      The guidelines are international - as is PMR and its response to pred and only pred. But there are some very arrogant and ignorant rheumatologists!
    • erika59785
      erika59785 EileenH

      Posted

      There are indeed some very arrogant and ignorant rheumatologists. Unfortunately, I had to make this experience.
  • aileen1955
    aileen1955 shelleysinclair

    Posted

    I have PMR &GCA, almost 2 years now. Handled v badly at the start, and when the GCA kicked in the rheumy wanted to send me away with migraine tabs, told him my gp suspected GCA and he said "that's rubbish sweetheart, I've been doing this for 35 years and have never seen a real case of GCA, it's very rare". Gp sent me to eye a&e who confirmed GCA. 

    i switched to another hospital, was on 80 mg pred at one time, with some ups and downs now on 15. 

    In Feb they asked me to try Leflunomide. The side effects seemed to build up v slowly: nausea, diarrhoea, mouth problems, short of breath, and palpitations. Recently the diarrhoea has got so bad they've decided I might not be absorbing enough.

    So now they want me to try Meth

    • aileen1955
      aileen1955

      Posted

      Sorry, cut off mid word! 

      Any opinions on switching from leflunomide to methotrexate?

    • EileenH
      EileenH aileen1955

      Posted

      One top PMR/GCA rheumy in the UK has said he thinks the only one worth trying is leflunomide. None of the DMARDs have been proven to improve outcomes in GCA or PMR although they do now feel that methotrexate might be worth adding in the first month of treatment - left until later it doesn't seem to make much difference as a steroid-sparer. Given your side effects I wouldn't still be taking leflunomide if it were me! They are probably worth trying - providing they don't cause side effects, there is not enough evidence to justify that.

      GCA lasts anything from 2 (rare) to 5 years - so being on 15mg after only 2 years is not bad and I wonder why your doctors are panicking. Or are they offering you methotrexate to allow a possibly option of tocilizumab? Which DOES work - but I suspect patients have to have "failed" other things before being allowed to try it.

    • aileen1955
      aileen1955 EileenH

      Posted

      Thanks for this, Eileen. I’m going on Tuesday so will see what they say. You’re right, guidelines for tocilizumab say the patient must have tried at least 2 DMARDS first. But as the rheumy nurse said, it’s not chemo; it’s not going to make you better, it’s managun the symptoms, so if the new symptoms are worse, what’s the point?
    • EileenH
      EileenH aileen1955

      Posted

      DMARDs are not proven to manage any symptomsin PMR - when they are used it is supposedly as a steroid sparer, they potentiate the action of the pred in some way so you MAY be able to get the same effect from a lower dose of pred. It isn't certain, it works for some people and not for others. Neither is the extra side effects aspect certain - some people are able to take them while others aren't. But nothing would induce me to take them if they made me feel worse than "just" pred.

      Were those the guidelines for toclizumab in GCa or in RA?

    • EileenH
      EileenH aileen1955

      Posted

      Different in GCA - the others are known not to work. Pred or tcz... That's all.

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