Originally Posted by
Kim McCormack
Hi mrmteo, thank you. I am not sure how much I can offer because I am UK so a very different system, drugs, etc it seems on reading some threads. But I am happy to share what I have experienced. I don't think that my story is so amazing but I do think that it is important to tell new people that there is lots and lots of life beyond wegeners diagnosis. Sometimes mind over matter and a will of iron is handy.
You on the other hand 'are' amazing! From what I have read so far, you seem to be really expert on so much and are clearly striving to do everything you can to give your mother the best treatment. Very lucky lady to have you in her corner.
When I had that initial attack of wg and it went un diagnosed for so long and the full renal failure, etc, it was a long time ago but I think that literally a week went past after being on the full recommended at the time treatment I 'think' that it was 150mg and I seem to recall about 75mg pred (loooong time ago). I do remember that the recovery was extremely quick and everything since has not been because of active wegeners but has been about management of the damage that had been done and the damage from the cyclophosphamide. I detest cyclophosphamide but if honest it saved my life. Strange quandary there with the chemotherapy.
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