Greetings

[Sangye]

Al,
I started with 60mg of Prednisone and am currently down to 20. I gained all the weight I had previously lost before I was diagnosed and then some!! (Got the “moon-face and big gut). A few other problems but seem to tolerate it pretty good.
The Dr. I have has not treated many WG’ers. He said he worked with 2 while in Rochester,NY and only me here. However, he is not afraid to call a specialist for assistance. He is a kidney Dr. by trade. I have no idea if there is other WG’er in the Spokane area and Dr has no idea as well.
Ken

Hi Ken, welcome to the group. Sorry you got diagnosed with this stinker of a disease but hopefully you can get into remission quickly and stay there.

I'm treated at Johns Hopkins by a Wegs specialist. He's told me the most important factor in having a good outcome is seeing a vasculitis specialist (or at least having one consult on your case regularly). I cannot overemphasize this as well. Check out the Vasculitis Foundation website. They list their specialists and those who will provide free consultations.

[Dryhill]

Hi Ken, welcome to the forum. As I am sure you have already discovered, you are in for a very exciting time with this disease. No more boring forward planning now you have the facination of waking up and seeing how you feel and you do get to go to exciting places and meeting new people .......... ok so they are hospitals, doctors and nuses.

Jim

[KenL]

Thanks Sangye,
I have read many of your posting and have learned a lot of valuable info. Yes, I only wish I were closer to some of the larger hospitals that spcialize in WG. My Dr. (Nephrology) has treated two others while in Rochester, so has a little knowledge and he will call for assistance if needed.
Thanks again for your continued service to this board.
Ken

[KenL]

Thanks Jim,
Love your humor. Spent 4 years in Milldenhall with the USAF and loved it.
Ken

[Dryhill]

Thanks Jim,
Love your humor. Spent 4 years in Milldenhall with the USAF and loved it.
Ken

I apologise for the loony army camped around your base trying to make your life unbearable, I hope you do not think that all Brits are like them. A lot of us appreciated having your support during the cold war.

Jim

[Debbie C]

Hi I'm new to the group...I was diagnosed last yearwith wg after having a partial lobectomy done. I was on cytoxin,preds and bactrim for about 4 months..went into remission for about 5 now its back. I was given a ritoxin injection buthad bad side effects from that so now that want me on Imuran and I am just worried about the side effects

[elephant]

Welcome to our family! You will certainly learn alot on here and we are here to help.

[KenL]

Jim, absolutely no apology needed. Believe me we had as many “loonies” stationed there as were living around the base. Like I said, I loved the 4 years my family and I spent in your country. Stationed at RAF Mildenhall from Jan 1970 -1974, we were very fortunate to travel and experience the unique history around England. Love to go back some day.
Ken

[annekat]

Hi I'm new to the group...I was diagnosed last yearwith wg after having a partial lobectomy done. I was on cytoxin,preds and bactrim for about 4 months..went into remission for about 5 now its back. I was given a ritoxin injection buthad bad side effects from that so now that want me on Imuran and I am just worried about the side effects

Welcome, Debra! I was diagnosed almost a year ago and put on the same drugs. I have not quite gone into remission yet but am doing very well. I'm sorry yours came back and wish I could answer you about the Imuran, but know that others will. You have come to the right place to get support and learn all about Wegener's.

Anne

[HopeinTN]

Sounds familiar Debra. I too was diagnosed in 2011 (Oct) after a lobectomy and wedge resection, and on the same meds. Welcome and you are in good hands here. You even get some comedy on days when you may feel down. It's a great pick me up.

Take care!