Greetings

[KenL]

I was diagnosed with WG on the 15 of Nov 2011. Am currently on Cyclophosphamide, Prednisone, Omeprazole, Gliepiride, and Bactrim. I am tolerating the med's quite well and am looking forward to achieving "remission". I am from Spokane, Wa and am wonder if anyone is from this area or the state of Washington.
Thanks for all the valuable information that this board supplies. I have learned so much about this crazy disease from the many inputs.

[HopeinTN]

It sounds like you have a great attitude and that's a great start. I was diagnosed last October and am also taking Cyclophosphamide, Prednisone and Bactrim. I wish you well on the road to remission.

[KenL]

Thanks and the best of luck with you as well

[Dirty Don]

Good for you, you are on the road w/ WG! As for Washington state, yes, there are a few from WA...even Spokane I think, Walla Walla, and Seattle area...if you don't get them, they will find you!!! Best of luck!

[KenL]

Thanks for the reply. I am looking forward to finding anyone from the Spokane area. Best of luck with our WG battle. Ken

[annekat]

Greetings from Olympia, and welcome to the forum! Yes, there are several in Washington on the forum, and some are quite active. I was diagnosed in April 2011 and have been reading the forum ever since. I'm on most of the same drugs you are, and while not yet in remission, my symptoms have improved dramatically, and I wish the same for you.

Anne

[KenL]

Anne,
Thanks for the reply. Although new to this board I continue to be impressed with the knowledge I have learned from reading the comments. Hopefully, after one year you are close to remission. Best of luck in the future. Ken

[Al]

Ken--You haven't had your DX too long, so you are probably still on a pretty high dose of steroids. I hope you are tolerating it well!

As I told you in an email, there are several of us in the general area. Is your doc in Spokane? I doubt there are any real specialists there, so you are lucky to have found someone who knows how to diagnose WG. Stay with us, and please report your progress! This is a good community.

Al

[KenL]

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

[Al]

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

The pred can be a nasty affair, Ken. I'm one of the few who actually lost weight, but I found plenty of side effects on my own....

My main wrangler is also a nephrologist. I find kidney docs, in general, a little more savvy than many, though I still have plenty of things to argue with him about. Or maybe that's just me....

Al

[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!

[renidrag]

Welcome Debra and all the others I haven't spoken to. I don't get on too often and also don't post often. Diagnosed 8/09 and drug free remission since 6/10. Keeping a good eye on the body with quarterly blood and visits. Good days and bad days. I would not worry about reaction to the drugs, I was on ctx for four months too long because I could not handle the Imuran, but there are others now and most people I have read about here have taken Imuran without a problem. Good Luck, you could not be in a better place for knowledge and understanding.
Dale



oops, forgot to change the avatar.

[RudiK]

Welcome to the group Jim and Debra, this is the best forum there is for WG patients. My history is very simular to yours. Was diagnosed in April 2011, was given Ctx, Pred, Gabapentin and several other drugs, went into remission in Oct 2011, and I'm now on Imuran, low dosage Pred, still on Gabapentin and several other meds. My body responded well to the meds with very few side effects. My primary doc is a Nephrologist in a group of Kidney specialists. The group has treated most of the local WG patients in El Paso. So far so good. Good luck to you and I hope you achieve your goals.

[Debbie C]

Well last nite was the first time I took Imuran (50 mg.) I slept good but woke up shaky. I had to take part of an anxiety pill to try to calm down before I took my 2 prednisone pills (5 mg. each ) I hate this crap....I live in Ohio and I moved away for 25 yrs. I moved back home after my father passed to help my mother and I have never been sick until I moved back here. And I hate taking medicine that makes u feel worse than the disease. Has anyone had any really bad experiences with Imuran. What do I have to look forward to?

[Debbie C]

hey renidrag....what drugs were u on that you are now in remission? Good for u I hope u stay well !!!

[Al]

Well last nite was the first time I took Imuran (50 mg.) I slept good but woke up shaky. I had to take part of an anxiety pill to try to calm down before I took my 2 prednisone pills (5 mg. each ) I hate this crap....I live in Ohio and I moved away for 25 yrs. I moved back home after my father passed to help my mother and I have never been sick until I moved back here. And I hate taking medicine that makes u feel worse than the disease. Has anyone had any really bad experiences with Imuran. What do I have to look forward to? All our drugs are "crap", Debra--but necessary, as no one knows anything better to do than put up with the crap. But sometimes there are alternatives. Imuran (azathioprine) is often hard on digestion (I sometimes get nauseous from smelling or thinking about certain foods), When it is not tolerated, CellCept is the next drug on the list. It has its own drawbacks for some people, but usually is well-tolerated. Insurers don't like it, because it is expensive--but they'll come around.

Al

[Sangye]

Hi Debra, welcome to the group! I'm worried that you have serious enough involvement to warrant ctx and rtx, but that you're only on imuran. Imuran is not strong enough to put Wegs into remission. It's very important to see a rheumatologist who specializes in Wegs. Fortunately for you, Cleveland Clinic has a world-famous Vasculitis Center. I suggest you connect with them for your care.

[Debbie C]

Hey Sangye....I see 2 rheumys from Cleveland Clinic...the one I just started seeing..he has a office down close to where I live,but he only comes down twice a month and he is always booked up. And I'm not to sure about him yet. The other one is very good but I don't always have a way to get to Cleveland. He had me take a rituxan infusions ( I was supposed to take 2) but the place that did it...here in town never did a rituxan infusion before and they gave it to me too fast and I had a bad reaction from that and they said if they gave me another there would be a chance I could die from it and my rheumy wouldn't let me have another....but it did take away some of the nodules I had in my lungs. I just have to wait and see what this doc. does when I go see him again and then I may go get a second opinion from the one at the clinic.

[Sangye]

Are the CC doctors vasculitis specialists or just regular rheumy's?

That stinks about the rtx infusion but there might still be a way for you to have it in the future. I suggest you only have infusions done at major hospital infusion clinics, where they know how to do them properly. I get mine done at JHU ( 2 hrs drive each way). The nurses there have told me a lot of horror stories about other facilities.

[Debbie C]

What are the symptoms when you first get saddlenose ?? I don't know if it's my sinuses or what. But my nose has been very dry so I put a nasal cream inside for moisture,next thing I know is I have a small hole on the inside on the bridge of my nose !!! I go see my ent tomorrow so I'll find out then but just curious. Got my blood work back and every looked good except my Vit D level was 102-toxic,so my dr. at the CC told me to stop taking it......after I saw the results on my own I quit but it was nice for him to tell me !! I go Monday to see him and I know he's gonna be mad about the Cellcept (me not taking it ) but that was 3 months of good bloodwork without being on it. Just hope my nose is O.K. I have a feeling he's gonna put me on something else though.I don't know if it's a flare or not but I keep getting hot flashes like having PMS....too late for that though.
I was out raking leaves today and thought of a good theme song of our condition..anyone remember that song.."Who let the dogs out..who..who.. !!

O.K. I think I'm getting dalirious (sp?) from being so hot going to take a shower

[annekat]

Debra, I didn't have any symptoms that I could relate directly to getting the saddlenose, just noticed it one day. I'm having trouble visualizing the hole on the inside of the bridge of your nose. Can you see it from the outside, or do you have to look way in there? The hole in my septum, which caused the saddlenose, is way up in the bony part where it's hard to see and my ENT needed to probe a lot in order to find it, and he said it was small. But it was big enough to cause the cartilage to lose its support at the point of attachment, if i understand it correctly. Anyway, your hole sounds a bit mysterious and I hope your ENT is able to shed light on it tomorrow.

[Debbie C]

I am unsure on who to believe.A few months ago I had a ct scan of my abdomen and they got my lungs in the view as well. I got a copy of the cd and the radiologists report and sent them to my reumy at Cleveland Clinic. The report said I had 4 small nodules in my lungs that were not on the previous scan. 2 -2mm and 2 -5mm in size and one looked like ground glass. Well I go back up to the clinic at the end of July ,so I called my reumy to see if I needed another scan done to see if the nodules have gotten bigger or smaller or what. When he called me back he said he was looking at my "beautiful " lungs now and saw nothing wrong with them besides maybe a little scar tissue and I didn't need a scan unless I start coughing up blood or something else happens !! Well first of all I don't want to wait for that to happen and second it concerns me that if the radioliogist is wrong about his report what else can he be wrong about not only to me but other people or what if my reumy is wrong ?? Do you guys think I should have my pcp dr. order another scan for me or let it go ??

[pberggren1]

Didn't you discuss this with your doctor?

[Alysia]

Hi debra,
about the CT: in that case I would have asked for second opinion.
another point: I read the all thread. you wrote there about the imuran: i cant take imuran (vomitting and diarehea) but the side effects of the imuran started only 3 weeks after I began it, and each time it was about an hour - two hours after I took it. so maybe what you felt was not conncted to imuran. maybe you can take it ?

[Debbie C]

Phil, I asked him (the CC dr ) when I first sent the report and cd and he said they were so small he wasn't concerned and know he's saying it looks like scar tissue ?????

Alysia, I can't remember what happened when I took the imuran BUT if I can get by without taking all that crap I'd rather not

[pberggren1]

I would talk to the CC doc about that again. Who do you see at CC?

[Debbie C]

Phil,I see Dr. Gary Hoffman, he is supposed to be the head Reumy there.

[pberggren1]

Gary is the best. I consulted with him once.

[erincollard]

Hi Ken, thank you for posting.
My 17 year old was diagnosed with GPA at 15 when he went into kidney failure. He is treated at Children's Hospital Colorado and they do okay but I hoped he would go to college in Baltimore where we consulted with Dr. Seo at Johns Hopkins. Unfortunately, he is looking at colleges in Spokane and Walla Walla. I would love to find him a nephrologist with GPA experience in that area. Have you found any good Weg's specialists in the Spokane area you would recommend? Thank you!
~Erin

[annekat]

Hi Ken, thank you for posting.
My 17 year old was diagnosed with GPA at 15 when he went into kidney failure. He is treated at Children's Hospital Colorado and they do okay but I hoped he would go to college in Baltimore where we consulted with Dr. Seo at Johns Hopkins. Unfortunately, he is looking at colleges in Spokane and Walla Walla. I would love to find him a nephrologist with GPA experience in that area. Have you found any good Weg's specialists in the Spokane area you would recommend? Thank you!
~Erin Hi, Erin, and welcome to the forum. The post you replied to is from 2012 and we can't be sure Ken is still keeping up with the forum. I'm from Olympia, WA and unfortunately don't know of anyone in the Spokane area, but there might be those on here who do, or you might have to go a little farther for care. I'd suggest you post in New Members Introductions, you might get more response that way, and we'd love to hear more about your son and his unfortunate diagnosis and how you all are dealing with it. To do this, go to Forum at top of page, then to New Member Intro, then to Post New Thread, something like that... give it a shot, and best of luck to you and your son.

[KenL]

Hi Erin,
First, I am so sorry to hear of your son and the Wegener’s diagnosis. It is truly a frightening and serious disease.
After many months of trying to solve what was going on with me I was diagnosed with Weg’s in Nov 2011. I had finally been admitted to the hospital and one of the Doctors remembered reading about this strange/rare disease in med school. Blood tests confirmed it and as it was evolving my kidney’s I was assigned a Nephrologists’. Dr Singh had treated 3 weg’s patients in the NY area before coming to Spokane, Wa. He has truly been a God send in helping me with this terrible disease. (I was approx. 71 years old when diagnosed.)
I have been in “Remission”since June of 2012 and have been completely off the many drugs since Nov2015. By far the hardest drug for me to be weaned off was the Prednisone.
Dr Satinder Singh is employed at the Rockwood Main Clinic in Spokane Wa. He is in the Kidney and Hypertension center. I simply cannot say enough good things about this wonderful doctor. (Although a very busy doctor).
The address of the Clinic is: 400 E. 5th Ave, Spokane, Wa 99202 509 838 2531
You can certainly mention my name if you so desire, if you contact him.
Best of luck to your son,
Ken Lien

[annekat]

Ken, I'm glad to see you are still following the forum.... perhaps I have missed some recent posts, and your avatar looks a little familiar.
Congrats on your remission! And what a helpful post in reply to Erin. I'm thrilled to know there is such a good doctor in Spokane, who sounds more than competent to handle Wegs with kidney involvement. I will do my best to remember that in case I hear of others looking for a doc in that area. I hope that Erin's son is able to get in to see him. :smile1:

[mishb]

Hi Ken. great to see you doing so well.

Hi Erin and welcome to the forum.
ArlaMo is from Walla Walla, so she may also be able to help with some names for your son