My sister was diagnosed with Wegeners with poly neuropathy in March she has...

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  • I took me about six weeks to feel a difference. So that is great news!

  • Sorry to hear your sister is unwell. - I was diagnosed in Jan 2012 with ANCA Associated Vasculitis with renal involvement. My experience so far has been - had all of January off off work, started back at work full time in February on light duties (desk work) while I did Chemo. Now I'm on Immuran and getting back to normal duties (but slowly). I do a lot of walking a lifting in my job (as would your sister) I still have bad days with fatigue, so not sure how work wise it will go in the long term.

  • (WG) I'm sorry to hear this Rebecca. I have had Wegs for over 9 years now. Unfortunately most cases are not a walk in the park. I strongly suggest you find a Wegs specialist. By that I mean a doc that has treated at least 200 cases of Wegs in their career.

  • Thank you everyone for your comments it does help to know how this WG affects others in the long run. Phil is there a listing for Wegs specialized doctors across the country. My sister lives in Southern Ohio and sees drs. in the Cabell Huntington Hospital that she works at (or did, maybe still does).

  • WG...Just thought I would chime in here too. As many have said everyone is different with their disease. I was diagnosed in Sept of 2005 and had mainly lung, sinus, ears, eyes and joints involved. After nearly 7 years I am still on a small amount of prednisone..3 mg a day and on Cellcept after being on Cytoxan, Methotrexate and Imuran. I have been in chemical remission since Jan 2006. I have not been able to work as a nurse since about a month prior to diagnosis although I know that others have managed to go back to work. The fatique is ongoing but I found it to be worse with the Cytoxan, Methotrexate and Imuran while others don't seem to be fatiqued with some of those. Each person reacts differently to the meds. Just tell your sister to be patient. To rest when she needs to and it will improve over time. I am so much better than I was 7 years ago but I am not even close to being where I was normally. Hopefully the Rituxan will make a difference for your sister. That wasn't an option at the time I was diagnosed.

  • Yes Rebecca there is a listing of Wegs docs. Just contact teh VF at: www.vasculitisfoundation.org

  • It sounds like the Cleveland Clinic would be the closest place for your sister to go.

  • I live and Wyoming and I go to Cleveland Clinic for care. It's worth the hassle for me to make the trips out.

  • (WG) Lots of neuropathy in hands and feet. Mayo doc told me if I don't regain the feeling by 2 years that it probably will never come back. Coming up on the 2 year anniversary . . . :-(

  • Fatigue is my most common complaint-I can take naps thank heavens