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Granulomatosis with Polyangiitis (GPA/Wegener’s)

Posted , 4 users are following.

Phillip1234
Phillip1234

I am trying to find a consultant in Southern England who specialises in the above.  Does anyone have any good experiences. I will pay to go privately but i dont want to waste my money being told what i already know. WE are getting no where with the NHS

Any guidance would be most appreciated

0 likes, 9 replies

9 Replies

  • dave170448
    dave170448 Phillip1234

    Posted

    Hello Phillip

    Ask your GP to refer you to Dr David Jayne - Head of the Vasculitis Clinic at ADDENBROOKES Hospital in Cambridge. This is a world class centre of excellence for guys like us who have GPA.

    David Jayne is the world's leading expert on the condition and has a great team.I only discovered him 2 years ago despite having Wegeners since 1999.

    Good luck!

    Dave

    • Phillip1234
      Phillip1234 dave170448

      Posted

      Many thanks, most appreciated, i will get in touch and keep you posted
  • meggie2468
    meggie2468 Phillip1234

    Posted

    I agree with addenbrooksyou have to be NHS can't be private.Very good and monitoring me every 3mts with emergency support if needed. As NHS GP had to refer.I don't see Mr Jayne but a member of his very good staff
    • dave170448
      dave170448 meggie2468

      Posted

      Quite agree Meggie. David is heading up a major research project to reduce/stop prednisolone - a really awful drug as I'm sure you know. I'm now on Retuxumab infusions and am cutting out the steroids - Phillip, if you are reading this, Vasculitis UK is an excellent support group that funds some of David Jayne's research work - you'll find them on the web

      Best

      Dave

  • jan6648
    jan6648 Phillip1234

    Posted

    Hi Phillip

    After 81/2 years I got to see Dr David D'Cruz at St Thomas's.  He diagnosed me on the first visit and keeps an eye on me.  Try getting your GP to send you to see him.  I had three quarter of an hour initial consultation with him and followed that up with a chest x-ray, ECG and 14 vials of blood taken that day and still left the hospital after an hour and a half even after grabbing lunch!  I then had a CT scan of my chest and sinuses and a lung function test.  He is brilliant.

    • Phillip1234
      Phillip1234 jan6648

      Posted

      Good morning

      Many thanks for your response. I just have a couple of questions if you dont mind. Did you see Dr D'Cruz privately or on the NHS. If it was the NHS was it difficult to get your GP to refer you if you wernt diagnosed at that time, or did tests that your GP had done already suggest a diagnosis. Thanks in advnace for your assistance

  • jan6648
    jan6648 Phillip1234

    Posted

    Hi Phillip

    In answer to your questions my referral to David D'Cruz was via the NHS but it took my doctor some timeto get funding for it.  They wanted me to have CBT which he tld them I had already had it and it made no difference to me.  The process wasn't too bad after that.  I had fought for over 8 years for a diagnosis because I had most of he symptoms of GLP but I nver had a positive ANCA blood test or biopsy (both nose and lungs) but5 he told me that I definitely had Wegener's (GLP) or Churg-Strauss (another vasculitis on the first visit..  Now I have the diagnosis my life is better an because I am now retired with not much stress my GLP has died down - ony had one episode in the last 2 years.  Hope that thi helps but if you want more info don't hesitate to contact me again.  We Weggies must stick together!!

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