Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

I have learned that what is most likely the cause of the Ascending Aorta Disection that I had in October is an EXTREMELY RARE autoimmune disease called Wegener's Granulomatosis. It attacks vital organs and basically causes the body to fight itself in that area. I have one of the tell tale sign in that my nose is beginning to literally fall apart. I now have a hole between each side of my nose and it whistles when I breathe. If the disease is not put into remission my nose will collapse. Typically what happens if not caught early enough is a loss of hearing, eyesight, lung & kidney function and death. So far it looks like it may have been caught early and should be treatable with Chemotherapy and Steroids. I am hoping the pill form of the chemo will be sufficient. I just do not want to be giving myself shots everyday nor do I want to go to the hospital for I.V. treatments. I was wondering if anyone here has this disease or knows someone with it and if they may be able to provide some insight.

Yesterday I met someone near me with the disease and we went to dinner last night. I learned alot. I was wondering if any OSO members or their friends have it and what info you may have. This can be a very debilitating disease. However, if caught it can be very treatable but the negative is the chemo. Hopefully, the chemo will work to put the disease into remission in short order and I will not have to remain on it for an extended period. Any help would be greatly appreciated.

Thanks,

Shane

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Sorry to hear about your condition, can't help you but will send a prayer, Think positive and you will beat this.

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Yes, my father died from it a couple years ago. Here are some info links I still have on my computer. You can PM or e-mail me at [email protected] if you wish.

-Greg

http://www.niaid.nih.gov/factsheets/wegeners.htm
http://www.vh.org/adult/provider/int.../Wegeners.html

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Shane, sorry to hear about that. No I do not know of anyone however don't let the treatments scare you. Some people are worried about the treatments and there after affects but it sure beats not taking them. Stay positive!

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Shane, sorry to hear that man. I've never heard of it before, but after reading the links Greg posted and knowing you found it early, it sounds like you'll be pullin' through just fine. Keep it positive. :)

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Shane, we're both very sorry to hear that. Let us know if there is anything we can do.

Paul and Valentina

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Why is it the good guys get sick first ? :mad:

Shane - you know I'm in the medical field so if you're not getting the answers you need or there's anything I can do to help from the NYC provider community please get in touch with me.

Best of Luck...

- - Wes

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Let's go on a Jack Daniels bender and we'll get you fixed right up there buddy!

Shane - keep the faith and never give up. FIGHT FIGHT FIGHT............and you will come out on top!

Good luck on the treatments and I hope to talk to you soon!

Dave

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Shane, That's what the doctors told me I had back in the mid 80's. It affected my right eye. One morning I woke up and my eye was swollen up... like I got in a fight. I went through 7 or so doctors, biopsys, chemo, steriods, IV injected antibiotics(that was like chemo). The last doctor was the one that finally diagnosed me with wegeners. This mess went on for about 2-3 years... finally one spring, I told the doctor to take my heart cathider out because it was getting time for boating and swimming. I have not been back since. I don't know if that's what I had or not... but that's what they told us. I'm doing great... other than my eye is swollen from the scare tissue where my body fought of whatever it was. Mark

Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?
 

Shane
Stay as positive as you were the other night when we talked on the phone.
Christine and I are here for you with whatever you need.
Chris