So Happy to Find This Website

[RPylican]

Thanks everyone, for all the information and advise you've given me as well as sharing your experiences with me. It definitely helps me know what I should be asking my doctor and helps me know what I should be watching for. I'm also going to work on getting Wegener's specialist but I'm not seeing any on the Vasculitis Foundation website in my area but I'll keep looking. Are WG Specialists usually Rheumatology Specialists or Vasular Specialists or what?

I think the reason I'm on such a low dose of ctx right now is because they caught it so early and, although they know it has affected my kidneys, it is very minimal and my kidney function is still considered normal. I think he told me that I only had about 5% to, maybe 10%, loss of function at this point. He did say he might have to increase the ctx but wanted to try the lower amount to see if I responded. He wants to try to use the lowest dose possible to reduce the risks that come with ctx.

[RPylican]

One other thing I wondered, I have had an Essential Tremor in my hands for a couple of years. It was never too bad but lately it's been a lot worse and I'm wondering if anyone else may have this same symtom. It's probably not from my WG since I've had it for so long but wondered if maybe the meds might be making it worse.

[elephant]

Most likely you will have to travel to see a wegeners specialist. When you go to the vasculitis foundation website, look for rheumatologist....Dr Carol Langford is one at the Cleveland Clinic in Ohio. I just checked the site and she is on it. They have other Rheumatologist who are at the Mayo clinic in Minnesota too. I travel very far to see her, but it is worth it. I don't want anymore damage, and I have two small children that I have to take care of. So if I take care of myself, I can take care of my family.

[jola57]

Early on I had a tremmor in my hands and it was from prednisone, now I get it only very rarely

[DEE]

i to get the tremor in hands and have been told its from prednislone it comes and goes usually get it in the mornings jusy after taking it
DEEx

[Nancy]

Hello RPylican,
welcome to our Group... Lots of information and experience here...as well as experiences... I agree with sangye - your doses (cytoxan/Pred) seem low for initial diagnosis with the understanding of hoping for low doses that remain effective with minimal side effects ...Your current doses do not appear effective..
The Vasculitis Foundation will list MDs who are Rheumatologists to Immunologists, Pulmonologists, etc... They just have this interest in specializing in wegener's ( thank goodness).... I am also 45 and have had Wegener's for about 14 yrs...limited Wegener's with limited pulmonary effects only until recently went systemic.... Be watchful and mention things that appear to have no connection or are just "bothersome"... WEGS comes in many signs, symptoms and appearances... Glad to have you hear for this shared experience...not glad for your troubles or diagnosis..

[RPylican]

Thank you so much for all the information all of you have provided me. After reading your responses to my situation and the things you have all experienced with Wegener's I am convinced I need a WG Specialist and will be contacting the the Vasculitis Foundation to try to find one that can consult with my Dr's. I mentioned in my first post that I thought my Dr's were providing me with so much info I didn't even know what questions to ask but now I have lots of questions just from listening to all of you, especially about my medication dosages. THANK YOU SO MUCH for all your support, for directing me to the Vasculits Foundation and for stressing the immportance of a WG Specialist. As someone who has always been pretty healthy and just recently diagnosed with Wegener's, it's good to hear from those who have been through the ups and downs and know the best way to manage this disease.

[Natalie]

Hi RPylican , I too was over the moon that I had found others with this disease , that dose sound a little weird but it is just so good to hear other storys and you can ask questions and get what ever off your chest , Its helps alot . I dont know abot you being lucky that they caught it early It sounds like you had gone through a terrible time with it . I know I sat an cryed many atimes not knowing what to do . welcome .