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Posts: 1
Joined: Sep 27, 2011

wegeners disease

Posted by @plc97875, Sep 27, 2011

i was diagnosed with wegeners in april, since thn i have been in the hospital twice, i have lost just about all my hair. I am in stage 4, I am pretty depressed lately what else can i expect from this disease


Irene estes

Posts: 1
Joined: Sep 30, 2011
Posted by @ireneestes, Sep 30, 2011

My daughter-in-law was diagnosed with Wegeners 29 years ago. She was in and out of hospitals for a couple of years and suddnely she just went into remission and has had no problems since, except for head aches and geting tired easily. I wish you the best and hope you are as lucky as she has been.


Posts: 1
Joined: Oct 11, 2011
Posted by @lovingwife, Oct 11, 2011

Hi my Husband (61) was diagnosed with Wegeners almost a year ago. Our doctor thought there was nothing wrong with him and prescribed an anti-biotic..He had not been well for a while and every one said he had “man flu” When our daughter & I managed to get him into hospital we were told if we had not ignored the health provider he would only have 3 hours to live. He was in a coma for over 3 weeks and every time we left him we said goodbye. 11months later he has come a long way. He has fought for his survival and we feel the young grandchildren have a lot to do with this. His kidneys are damaged (he is on dialysis) and he gets very tired, he also gets very weak but he is, with the help of his specialists living a near normal life. He is doing well and in remission.

Nancy Kauppi

Posts: 3
Joined: Oct 09, 2011
Posted by @nancykauppi, Oct 26, 2011

what medications are you on? I will be starting methotrexate tomorrow after having 6 cytoxin infusions

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