Dad diagnosed with Wegener's Granulomatosis

Some 20 days ago my father was diagnosed with Wegener's, but no kidneys affected, at least not yet. We are Greek, living in Greece and first time even heard of the disease. It is too rare in Greece. Now on therapy with prednisone (50mg per day and cutting down 5 mg every week) and a monthly dose of cyclophosphamide (I believe called Cytoxan). Any help on how to understand what he is going through and support him both mentally and physically would be very appreciated.

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  • Hi

    For most of us the first time we've ever heard of Wegener's is when we are diagnosed. The cutting down of the Prednisone (Prednisolone in the UK) might be too quick. 20 days and then reducing might not bring the inflammation under control. Doctors like to get us off the steroids but, unfortunately longer periods are often required if they are to achieve what they are meant to do. The longer we are on the Pred the slower the reduction has to take.

    Cyclophosphamide is what it is called in the UK and is the main drug currently used to bring the Wegener's into remission. Then maintenance drugs are used.

    I have checked and there does not seem to be a vasculitis expert in Greece. If you suspect that your doctors don't know enough about Wegener's then ask them to contact Dr David Jayne at Addenbrooke's Hospital at Cambridge here in the UK. He will offer free expert guidance to the physicians treating your father.

    You may find that reading through the medical section of the Route Map for Vasculitis might help you understand what's happening to your father - vasculitis.org.uk - and follow the links. Maybe this would also be of benefit to the physicians. Also there is a section for the family and carers of a patient and a section on dealing with the problems associated with having one of the vasculitic diseases.

    If you need any further help please post again. Hope all goes well with your father.

    PatriciaAnn

  • if you would like to discuss your father in a private message please do.. also you can email John ..jandsmills@btinternet.com and he will help in anyway he can...

    take care

    Susan

  • There is a European Vasculitis support network... I will try and find the details for you.

    John

  • Thanks in advance. I heard there is a Facebook group too, so I opened an account there. I'm trying to find other Greek speaking people for my father to chat with, since he doesn't speak any other language and keeping contact with like-persons is of great help. If there is such people out there, please contact me. Thanks again for being there for all of us

  • John says he knows someone who maybe able to help. Can you email John jandsmills@btinternet.com

    All the best

    Susan

  • Good morning. Is it a Greek or a Greek-speaking person you know? No matter, could you give his/her mail to me? chrysa.megagianni@gmail.com

  • Hello once more from Greece. My dad is doing really well. He's had cyclophosphamide twice till now (he' going for his third shot tomorrow) and his prednisolone dose is already cut to 20mg from 50mg at the beginning two months ago. What I am worried about is that he does not seem to take enough care of not catching the flu or any other "simple" virus disease. I'm a dentist myself and mother of a ten months old baby and I need your help to find out whether I am overreacting in protecting my father too much, since I know that I catch almost everything at job (at present I got a cold) and that children diseases (although too early to be concerned) could be very serious at least until he gets into remission. Please help me stay "professional". Thanks in advance.

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