Hello Fellow WGrs

[markw_72]

First off, I thought I was the only one. Glad to find this site.

My name is Mark Wright. I am 38 years old and living in the grand state of Virginia in the USA.

My problems started out with a bad pain in my lower abdomen area, so I went to a gastro doc. They did a lower ab CT scan that also cought the lower part of my lungs. Seemed ate up with something so he sent me to the best pulminary doc in Va. He suspected right away that it was WG.

Lung doc did a full chest CT and decided he needed more. So here comes the bronch. The lala drugs dont work on me so I felt everything as he went down my nose into my lungs trying to get enough to biopsy. couldnt get enough. So I go to a heart surgeon to take a chunk of my right lung to biopsy. Came back WG.

I am a smoker, so I always thought my lack of breath was because of that. Come to find out I only had 40% of my lungs due to WG (sure the smokes arent helping). Always had nose bleeds but didnt think anything of it. Was told I am the first case in Virginia in 25 years.

After reading other posts, I dont think I should be posting here. Alot of yall have it alot worse than I do. Mine was cought early and only attacked my lungs so far. As of today (6/20/10) I am 4 months into my chemo treatment (and all those other pills) and my wg is slowly shrinking away.

Predisone. Holy crap the doses I've read that yall are eating!!!! My largest dose was 40mg and I was bouncing off the walls and eating everything I could find. I'm a skinny man so gaining the weight was a good thing but I could not imagine doubling the dose. I'm at 10 mg now. My chemo reg is for 8 more months.

I didnt know it could come back. How did we get it? This is the second time I've hit the Virginia medical lottery and been in the books. good for me huh?

Would love to talk to more people who are going through this with me.... awesome to know that there are people going through this with me. Sucks to be me and you.


Mark Wright

Lynchburg, Virginia. USA

[pberggren1]

Hi Mark:

Welcome to the site. I am glad you were diagnosed so quickly.

I have trouble believing that you are the first case of WG in VA in 25 years. It is rare but not that rare.

One thing that jumped out at me is that you said you have been on chemo for 4 months now. I assume that is Cyclophosphamide. If it is you should not be on it for more that 6 months at a time. Anything over 6 months is dangerous.

I hope you are seeing a Wegs Specialist. Not just a regulart Rheumatologist or Pulmonologist but one that specializes in Wegs. Which specialists do you see and where?

There are 4 centers in the US that specialize in Vasculitis such as Wegs. They are the Mayo Clinic in Rochester, MN, Boston University, Cleveland Clinic, and Johns Hopkins University in Baltimore.

I suggest you contact the Vasculitis Foundation to find a Wegs Specialist. Probably Johns Hopkins in Baltimore is the closest to you. Dr. Seo there is the lead man and one of the best in the world.

Take Care,
Phil Berggren

[Lightwarrior]

Welcome to the group Mark!! You will find all the support and information to keep you sane in this forum.

[markw_72]

I have been on Cyclop for 4 months.... tomorrow I start azathioprine. 10mg of predisone, 50mg of septra, and calcium twice a day.
I have the best doctor in Virginia. Dr Albert Baker with Lynchburg Pulmonary Associates. He may not be a specialist in the WG but he had a feeling what my problem was and he was right. He started me on an aggresive Chemo and within 4 days it started to shrink. I trust this man with my life, Everyone in his office is awesome too.

I just love the fact that I found this place. You ,sir, are my first brother in arms with this disease. Thanks for replying to me.


Mark Wright

[pberggren1]

You are most welcome, Mark!

We welcome all to this site. It has been a new lifeline for me. I found the site in March of 2009.

I am glad to hear that you are switching to Imuran.

I am 34 and was diganosed in April 2003.

I wish you all the best and please keep in touch.

[Sangye]

Hi Mark, welcome to the group. I live next door in Maryland. I'm sorry you've got this stinking disease but glad you found us.

I'm sure I won't be the only member reading your post and wanting to jump through the monitor. A couple weeks ago we lost a member named Mark who was also 38 yrs old, and had been diagnosed 3 months prior with supposedly sinus-only involvement. He died of a heart attack after his heart was silently destroyed by Wegs. He didn't have a Wegs specialist on his case and no one did a routine test to check his heart (echocardiogram).

I'm a major nagger about having a Wegs specialist, and each time we lose someone who didn't have one I nag even harder. I'd rather have you upset with me but alive than happy with me and damaged or dead. Lung involvement is severe. Any involvement can turn deadly.

So. There's no way you're the first Weggie in VA in 25 yrs. That alone tells me your doc doesn't have a clue. Like Phil said, it's rare but not that rare. Your doc may be great for regular diseases, and it's great that he dx'ed the Wegs (though with an open lung biopsy it's not rocket science), but he's not skilled enough to oversee your care. One year on chemo (I assume you're on cyclophosphamide/cytoxan/ctx) is not the norm. That's what they used to do, and that's what the textbooks still say so regular docs just do that.

I'm concerned that your doc also doesn't seem to be educating you about Wegs. It's not like cancer that can be cured. It's vital to learn everything you can about Wegs, the drugs, the diagnostic tests, etc.... You have to know how to recognize worsening disease. You're responding well to treatment now, but Wegs is often not straightforward. It can change on a dime.

Please get to Johns Hopkins asap. The Wegs specialists there each see hundreds of patients with Wegs from all over the world. Dr Seo is my doc, but all 3 of the Wegs docs there are amazing. Appointments at the Johns Hopkins Vasculitis Center

Edit: I just saw that you're on ctx and starting on imuran. That's more like it. I thought he was keeping you on ctx for a year.

[Jack]

Hi Mark.
Listen to Sangye, she tells it like it is!
Around 50% of Wegener's patient suffer from relapse and you need to be able to pick this up in its very early stages should it happen to you. That way the treatment required will be reduced - always a good thing because it is all very toxic and has long term side effects.
Are you taking anything to protect your stomach? You need to because long term medication will ruin your digestive system.
Glad to hear that your treatment is going well to date, but you might need to take action now in order to keep it that way.

[Sangye]

Also, no matter how good they are, a lung doc should not be overseeing your care. A rheumatologist is necessary. I was dx'ed by an awesome pulmy and I wanted him to remain my main doc. But he made me go to a rheumy (who was one of the worst docs I've ever been to). Neither was a Wegs specialist, though and that almost killed me.

[Col 23]

Welcome Mark glad you dont feel so alone with WGs now.
Jack just picked up on "are you taking anything to protect your stomach" havent heard about that. What sort of med do you take to protect the stomach. As you know Im on Meth and Pred and have been since Xmas 2009.
Col 23

[JanW]

Welcome Mark -- Others are right -- the rheumy should be the quarterback on your care. You should be getting bloods drawn fairly frequently both to monitor your response to the drugs good and bad (I was dx in January and went from every other week to every six weeks currently), having urine taken (for signs of kidney involvement), have yearly echos, eye exams and hearing tests. Get a baseline on everything you can get a baseline on from the ENT (so for me that was hearing, and continual checking of sinuses, where I have very minimal involvement). My main symptoms so far are subglottic stenosis (scarring on the windpipe, necessitating surgery last March) and a saddle nose (the bridge of my nose collasped). Glad to hear that you are going off ctx and on to imuran -- always be mindful that some drugs may work, some may not, some may work for some time and then stop working. Some people always need to take drugs to keep the WG at bay and some do not. Good luck, and you are certainly not the only one in VA. -- I am reasonably certain that I have seen others on this very board from that state.