New Here

[Maestra]

Hi, My name is Heather. I was diagnosed Dec of 2007. After reading many post, I see that I have been lucky. In 05 I was treated for Lymes Disease, though that is most likely not what it was. I was not until June of 07 when my blood pressure spiked did doctors really begin looking. After seeing a cardiologist, ad a few other specialist my doc finally sent me to a kidney doc. He diagnosed me almost immediately. A couple weeks later after a kidney biopsy and some tests he confirmed WG. I spent 6 months on prednisone and cellcept. I am still taking cellcept. I have been fortunate in that the WG has only effected my kidneys. But in 07 I was told 97% of my kidneys were damaged.

This week, I have learned that my remaining filters are failing. A transplant will need to happen sooner than I planned. I looked for suppport groups in 07/08 and was not successful. With the new outcome of my tests I have begun looking again. I look forward to reading the experiences of others, and hearing about struggles that I share with other WG patients. My friends and family are great, but sometimes they just don't completely understand. So, I'm excited to chat with you all.

[crackers]

hi maestra and welcome.i too consider myself to have been lucky.since all this started in dec 2006 i've suffered no major organ damage but suffer from extreme fatigue which has meant i am unable to work.everyones life is affected by this disease but there are varying degrees of severity.anyway welcome to our family and browse the other posts to read other peoples experiences.
john.

[Gary]

Welcome to the group. I too consider myself very lucky. I went through a bunch of tests after having an MI only to find I had WG in my lungs.
Got that cleared up and have been getting lower and lower doses of meds. But, my bod keeps flirting with active WG so can't come off yet.
Waiting for blood work to come back and I hope it is good. This group has alot of good info that you will find helpful. LOL

[Sangye]

Hi Heather,
You have a great outlook! I mean, you need a kidney transplant and you still say you've been lucky!!

Are you still on Cellcept? Why didn't they use something stronger? I hope you go to Mayo Clinic for treatment. They're Wegs specialists and right in your backyard.

Feel free to ask anything, share anything, whatever. We all understand, that's for sure!

[Maestra]

I visited Mayo right after my diagnosis. My kidney doc started me on high dose prednisone before he even confirmed WG. I had been on that for about 3 weeks when I went to Mayo. Mayo declared the prednisone was controlling everything and there was no need for cytoxan, or anything stronger. I had gone to partake in their research on rituxamaub. They sent me back to my kidney guy and said continue the prednisone and add cellcept so they did.

I went home and took 60 mg of pred. and 2000 mg of cellcept. I am currently off pred. and now at 1500 of cellcept after 21 months.

My kidneys are the only thing damaged at this point. So, bad I now face a transplant. But, reading all the other stories and symptoms, I feel quite lucky. Don't get me wrong it sucks! I'm recently married, 33 and would love to have a family and that does not seem possible to me right now. One reason I am looking for groups to talk to and share experiences. So, thanks!

[Sangye]

It sounds like the Wegs must have done kidney damage quickly but didn't turn into more widespread or ongoing active disease.

I'm glad you were spared chemo. I don't know anything about becoming pregnant after a kidney transplant, but it seems having to remain on immunosuppressants (anti-rejection drugs) would rule out that possibility. Your Wegs docs obviously know what to do.

I understand how it is to feel lucky but still not thrilled with your current condition.

[Doug]

http://www.wegeners-granulomatosis.c...pregnancy.html

This just came up, and may be of help to you. Also, welcome to the forum Heather! We are a small, slightly dusfunctional "family" here, and the more the merrier!

[jola57]

Welcome Heather, happy that you found us. Your outlook is so good, so keep it up and we will face everything with you together.

[Maestra]

Thanks! It's been tough sometimes. I just try hard to keep things positive. I'm struggling right now wondering if I need other doctors and a new kidney guy. My kidney guy left me a message last Friday that it appears my remaining filters are no longer able to keep up. He would be in on Tuesday for any questions. Even after frustrated discussions with his staff I still have not heard from him, a week later!

He does his test every three months, but is he looking out for other areas too? That's what I am starting to wonder. After reading all the post I worry about sinus, and lung issues too. I see my gp once a year and she's pretty hands off with this. Myhusband and I are wondering if we should return to Mayo for a check. It's been almost 2 years since I've been there.

[Sangye]

I vote that you absolutely need a Mayo Wegs rheumatologist following you on a regular basis. Kidney Man may or may not be following everything, and it isn't his specialty. Even excellent GPs are out of their league with Wegs. It would be great if a Wegs rheumy reviewed everything and said it's all just fine as is.

What explanation does your neph give for your diminishing kidney function? Is it typical for them to continue to decline like that, even in the absence of active disease? Or does it suggest the Wegs is active again?