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  3. Granulomatosis with Polyangiitis

Diagnosed in 2006

Posted , 4 users are following.

BoaterBob
BoaterBob

After reading the other experiences I feel I have been let off lightly so far. My main symptoms are Granulomous stricture of the upper urethra for which I have a suprapubic catheter inserted, Lesions on the lungs and an Aneurysm of the illiac artery in my abdomen. The lesions and aneurysm have been reduced by various levels of prednisolone but the stricture remains and despite being referred to a reconstructive specialist in Manchester, it would appear that I m stuck with it for the foreseeable future. My rheumatologist did consider the use of cyclophosphomide to reallt zap the ANCA, but after considering the likelyhood of infection via my catheter has disgarded the idea. Apart from the discomfort and inconvenience of the catheter I am able to lead a fairly normal life though I do suffer the dreaded fatigue as soon as I exert myself.

Has anyone experienced Cyclophosphomide, was it a success, what were the side effects?

Regards to all, .... keep taking the pills

Bob

0 likes, 3 replies

3 Replies

  • Biffa53
    Biffa53

    Posted

    Hi Bob

    I was diagnosed with WG 12 month ago, like yourself I had Lesions in my lungs along with ear and nose problems, nerve damage to both legs. Some scaring my kidneys. The treatment I had was high dosage of prednisolone and also treated with cyclophosphomide. There was some improvement at first but then my condition went worst. I was then given Retuxamob which along with prednisolone started to improve things. I am now a a small amount of steroid and also Methotrexate. I am feeling a lot better now but still not into remission. Not worked for 13 months but I'm hopeful for a return in the new year.

    Dave

  • Debbie_Ley
    Debbie_Ley

    Posted

    Hi, I was desperately ill. Wegeners was kicked out with Plasma exchange and Cyclophosamide. I was on it for 3.5 months and went into remmission. I felt quite sick in the morning but nothing as bad as pregnancy sickness. but was that the Wegeners or the drugs? My hair broke off and thinned and I was glad when I was off it. Were you long before diagnosis? I have been back to work since July and what a boost to me. I think sometimes what would my life had been like without WG but my life would be the same. I'm lucky as I have no fatigue. I live a normal life and the other day said life is great just as I would have before WG. It helps to talk to others with the same illness. Keep well. Debbie
  • Guest
    Guest

    Posted

    Hi Debbie,

    It sounds like I've been saved a lot of discomfort by not going on Cyclophosphomide, I'd heard it was quite formidable. I've just had the all clear from my vascular surgeon who says my inflamatory aneurysm has now reduced to a nornal level due to the sterroid treatment and he will scan me again in 12 months time.

    The thoracic specialist reconned I'd had wg for \"some considerable time\" before diagnosis as a result of my urethral problems.

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