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Rheumatology again

Posted , 5 users are following.

Whisper2003
Whisper2003

Nurse specialist appointment today was better than expected! She trained under Prof Bhaskar Dasgupta who she described as passionate about GCA/PMR. Diagnosed GCA/PMR Feb 14. 12 mg pred now, up from 9 mg due to flare with raised CRP. She said methotrexate is the way to go and Leflunomide not  suitable due  to pending heart surgery. I took letters from cardiologist and heart surgeon which she photocopied and said she would write to them with her suggestions on reductions of pred using Methotrexate. Maybe someone who is looking at the whole picture and not just one portion? 

2 likes, 7 replies

7 Replies

  • EileenH
    EileenH Whisper2003

    Posted

    Even Dasgupta has now signed his name to a paper saying the use of methotrexate does not have adequate evidence of success. Needless to say, I can't find the paper! In terms of the use of mtx - I am of the opinion it should be up to the cardiologist as to whether he feels mtx is likely to interfere with his end of the story.
    • Whisper2003
      Whisper2003 EileenH

      Posted

      Thank you Eileen for your response. I have looked at quick & kirwin but not Dasgupta. If you find any links please let me know. Still not convinced personally on Methotrexate but yet to be persuaded!
    • Whisper2003
      Whisper2003

      Posted

      Also am fond of a glass of wine in the evening which could be contraindicated!! But beside that fact she was the first person to ask how I feel, to score pain levels, and questions about scalp and jaw pain!!
    • lodgerUK_NE
      lodgerUK_NE Whisper2003

      Posted

      Whisper you have done brilliantly so far.  I had GCA and not PMR, but whilst Methotextrate has been used as a steroid sparing agent to get down to 12mg in a year is excellent.  It took me nearly three years to get down to that level  (I had two flares in the first eighteen months). In remission now for 3 years and counting.

      I was offered Metho but refused it (personal decision) as it just seemed I was adding another drug with accompanying side effects.

      I do know that some people have found that Metho did help but they had PMR and Late Onset RA (Metho is the best treatment for RA),

      I realise it is a very personal decision but if I was having heart surgery I would stick with the pred only, all the side effects are well known and understood and whilst both GCA and PMR can and do go into remission.   Hearts should come first in my book.

      Well that is my sixpennorth for what it is worth.

    • Whisper2003
      Whisper2003 lodgerUK_NE

      Posted

      Thank you, Lodger. I feel like you and have resisted other drugs as this one is enough to cope with! She did argue that she has access to Dasgupta's latest research which I haven't.......and also that my surgeon may refuse to operate at this level of prednisolone. Still hovering on a flare at the moment and don't want to change anything until it settles down -  well, hopefully. 3 weeks til blood test as my arms need a rest!
    • EileenH
      EileenH Whisper2003

      Posted

      I think I'd ask the cardiologist about whether they will operate at a given dose of pred. I have come across GPs and nurses who insist you have to be off pred before you can have a hip replacement for example. Which is not true - it depends on the surgeon. 
    • Whisper2003
      Whisper2003 EileenH

      Posted

      Yes, I will ask him but have been chasing cardiology for an appointment for 3 months! I will try again.
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