So may questions

Hello Everyone!!

looking for some answers is that I found you. hopefully you can give some ease to my heart. Robert and I live in San Diego CA USA; he has been recently diagnosed with wegners, now he know he has been suffering this disease for long long time until 3 years ago a ETN Dr diagnosed. He;s on is second round of clyth and steroids only to find out that the Med is not working; he have had several attacks we call it "asthmatic" attacks and physicality not able to do much or nothing; a hole appear on his palate and another one is forming. The doctors here in SD with not much of experience "bless their hearts" are now thinking to change his med to rituxan infusions; i hear nothing but good thing about it. He is getting mental tired and me afraid among other things. Any information is so valuable thank you so much all. Gabriela

9 Replies

  • It's a long battle to get a definitive diagnosis. They use cyclophosphamide as a first line med but it can be not right for many. I hear Rituximab is very good and works well for many

    I am in hospital right now and have been told my treatment was wrong for probably 2-3 years as they still thought it was mainly infection based. I am awaiting results on Tuesday and if no infection then I will start cyclophosphamide twice monthly ASAP.

    I was rushed in with blood pouring from nose and mouth with my right lung haemorrhaging badly

    Hang tough. It's going to be a big change in lifestyle but we can all change our ways to suit

    I wish you all the very best. I've been on prednisolone, methotrexate, mercaptopurine & currently azathioprine. I've suffered from a really awful fatigue for years too and much more. Random sweats, abscesses etc. I try my best and that is all we can do

    God bless you

  • You are so right

  • As Jools says, it can be a long road. My husband has Wegeners and they tried him on Cyclophosphamide, followed by maintenance drug of Azathrioprine, then Methotrexate then Mycophenalate. They didn't hold it at bay, so he then had 4 x 6 mthly infusions of Rituximab. It's been 6 years but slowly he feels better and is able to do more things he used to do. Steroids have come down from 70mg per day to 5 now.

    You've got to stick with it, life will get better but try to search for a consultant who know about Vasculitis.

    Good luck with your journey

  • Rituxan is easier on the body than cyclo. I am in remission I think, but do not have any energy at all, think that's all part of the illness. Hope you do better in the next round.

  • Have you contacted the vasculitis foundation? ( they are based in the USA and may be able to help you find a specialist in vasculitis in your area.

  • Hello Devon, yes as a matter of fact they help us find the best so far at UCLA, is nice to know someone understand what is going on you know??

  • Had rituximab for two yrs infused every 6 months did absolutely nothing for me just another toxin in an already toxic body had WG for 21 yrs now a nightmare never ending with problems galore i will pray for Robert that his journey with this disease has less problems than most take care.

  • thank you Anni, yes i asked God and Virgin Mary for help every single day and night. Sorry to hear the Med is not working for you. Like Robert said, just keep me alive until a cure of something similar will help :) He is such a positive fellow.

  • Are you ANCA negative??

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