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Devastated

Posted , 11 users are following.

rapha
rapha

I was diagnosed with gca/pmr in november 2014.  3 weeks ago on the the day I was to drop to 1mg I had to be put back to 15mg due to an agonising flare up, naturally I was heartbroken.  I am off to see consultant today to see where we go and I know he wants to put me on methotrexate and I do not know what to do as I have heard such horrible stores about this drug.  Any advice...I am off to hospital at 10 am uk time.

0 likes, 13 replies

13 Replies

  • Sheilamac_Fife
    Sheilamac_Fife rapha

    Posted

    Oh Rapha! I feel for you! You will be at the Rheumy now. Let us know what he says. I know that I'd be inclined to stick with Prednisolone. The devil I know. But I'd like to hear why not...

     

  • EileenH
    EileenH rapha

    Posted

    You are barely 3 years in - both PMR and GCA typically last for a median time of just under 6 years. 

    The evidence is that methotrexate works well to aid tapering in GCA WHEN IT IS STARTED IN THE FIRST MONTH. A couple of rheumies I know have said they don't think it has a place introduced later. 

    Did you REALLY need to go back to 15mg? The usual advice is to add 5mg to the dose where the flare happened - maybe 7.5mg would have been plenty. 

    I have a friend who added methotrexate for (assumed) PMR and was sure it helped her reduce the pred dose lower. She had no problems with mtx at all. However - about 9 months ago she was switched to leflunomide and has just taken her last pred tablet. She says she could feel the leflunomide "kick in" - I don't know if she must continue with the leflunomide, I asked and got no reply.

    Many many patients take mtx for rheumatoid arthritis with no problems at all. Others don't. I have always disputed its use in PMR but my view now is that it may be worth trying when you have real problems reducing. Not at the first flare nor if you get to well in single figures before anything happens. If you can take it without any side effects then it is worth the trial - but not if you have side effects. So in your case, I would argue to be allowed to try a relatively speedy reduction back to 10mg, possibly try 7.5mg, and then slow down and do a more normal 1mg/month reduction. 

    Are you sure the flare is the PMR alone? I have just had a flare of back and hip pain due to having flu. But a lot of the pain is due to myofascial pain syndrome causing sacroiliac problems - that is being managed in a different way, the PMR is fine at 7mg. I live in northern Italy - and they are willing to look at other approaches to the add-ons. 

    Sorry this is a bit late - I've been sorting my own back problems! Where are you? What hospital are you under? And of course - what did they say? There are tests and stuff to be done before mtx is started so you won't be standing there with tablets in your hand!

    • rapha
      rapha EileenH

      Posted

      I declined the methotrexate Eileen...no evidence it would definitely help Dropping to 12.5 tomorrow for 2 weeks then to 10mg. Then to 9mg and 8mg each 4 week s then I go back beginning of June. I am having another dexa scan. I am at Freeman Hospital in Newcastle and part of pmr north east group. About the rise to 15mg...I did as I was told I was in agony every morning on waking...could not move😣😣

    • ptolemy
      ptolemy rapha

      Posted

      Hi Rapha, 

      Hope your reduction goes well. If you have problems just stop don’t try and carry on with reducing, it never pays off in the end.

    • EileenH
      EileenH rapha

      Posted

      Fair enough! I don't know a lot about the rheumies at the Freeman - just the previous incumbents at Gateshead. Hope it all works out OK.

    • rapha
      rapha ptolemy

      Posted

      Thank you for that encouragement.
  • rusty49
    rusty49 rapha

    Posted

    Sorry to hear about your recent flareup - I was diagnosed in mid-2016 but went off low doses of prednisone too early and experience frequent but mild relapses.  Aside from medication what other treatment(s) have you done?  For example, have to adjusted your diet?  Any PT, stretching (yoga) or massages?  Most of my flareups are excess exercise and diet related.
    • rapha
      rapha rusty49

      Posted

      I eat healthy always have since breast cancer twice! No sugar low carbs! Plenty greens nuts seeds etc. I walk 6 days a week and can really step it out!! Thank you for your interest. You can see today's result up above x

  • margot34956
    margot34956 rapha

    Posted

    Hi Rapha, I am so sorry for you. I want you to know I am thinking of you. Let us know how you get on.

    All the best!

    • rapha
      rapha margot34956

      Posted

      Thank you Margot. I decided not to take methotrexate do am back on a reduction plan for the steroids.x
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