27yo. Sarasota, FL

[Gator]

I'm a 27 years old male in Sarasota, FL, was diagnosed in August 2010 with WG, and am now (April 2011) healthy on imuran and bactrim. I stopped using cyclophosomides and prednisone in January 2011. WG affected my sinuses (primarily in my nose) and lungs before I caught it and got on meds, luckily before it got to my kidneys, and it is gone elsewhere now. I'm told that by Jan 2012 I may be able to be off imuran/bactrim and just get my blood tested once every couple months or so!

The following is more than anyone wanted to know, but my candid WG story. I don't write a lot normally, so I'll put it all at once.

I think I was fortunate: In Feb 2010 I started firefighting school and it turns out that at the end, in late July, those physical stresses on my body allowed me to stop seeing worthless ENTs and got me to test my blood and start seeing a rheumatoidologist. On that morning in late July, after doing 3 consecutive days of very hard firefighting training (bc I had a 10 day fever right before and needed to make up critical days outdoors), I woke up -after going to bed with a football sized right foot and ankles, knees, elbows, and wrists that felt like nails were being driven into them- barely conscious until I received a cortisone (or prednisone, like I said I was out) shot which made me not much better but semi-mobile. I didn't know what I had but I was on the road to finding out and not waiting for ENTs looking for surgeries. Within a day or 2, my Dr said he thinks I may have WG. On Aug 20th, I had my surgical lung biopsy to get a useful tissue sample that could confirm WG for the Rx of cytoxins. It wasn't a scope through my trachea or a needle through the chest (unfortunately my nodules were off mark); it was a 5 inch incision under the armpit. -Not huge but not fun. My cardiothorasic surgeon said he got his hand in there to feel around for a mental image.

I will say that in Dec 2009 I did start getting/blowing out the infamous blood-buggers. By March 2010, I had zero percent use of my nose; throughout firefighting school, I never had use of my nose really, with the exception that my ENT gave me prednisone in small doses a couple times where my nasal passages and sinuses opened up near 50% on the specific days that I was on it. It felt so good to breathe again; to not have a suction created when I drink, and so on even if just for an hour.

I think it's neat that there are that many of us out there in a sick way. Before I was thinking it was maybe rarer than it was and I guess I never sought the support. I am as new as can be here, so I will be looking forward to getting to know this site and it's members and helping myself learn what a 27yo can about living with WG.

Thanks for anyone that read it. As well, I also use nasal rinses once or twice a day. And smoke pot, and quit dip Aug 20th. I consider myself to be fortunate in ways and not lucky in others.

[delorisdoe]

HI, nice to meet you. I dont smoke pot. Dr oz had and episode this week that was devoted to an hour long debate on medical marijuana. Did you see it? It was quite a passionate debate. Motel williams was on it and he was visably shaken and upset. I was 27 when I got sick and 28.5 when diagnosed. I feel now as though I lost alot of my "fun" years. Try not to do that.

leigh

[Jack]

Hi Gator,
We have had the discussion in the past about the use of pot and you won't find many on the site using it. In general, the risk of causing further damage to the lungs and sparking a repeat Wegener's episode is far too scary for most people. There is also no evidence that it has any beneficial effect on Wegener's, just that it makes you feel better while a bit high.
Your experience of Wegener's to date has been at the more mild end of the range due to your early diagnosis and I would love to think that it will remain so. But in order to give yourself every chance, you must learn to look after yourself and accept that your body is not as resilient to abuse as it might otherwise have been. I'm sure that the stories you read here will fill you in on just how bad things can get.

[Sangye]

Hi Gator, nice to meet you. I'm amazed that you can continue working as a firefighter with Wegs. I'm glad that you're doing well on imuran and bactrim (no pred--yay!). I hope you stay in remission for a long time.

[delorisdoe]

i cant imagine not working flare or not...even at my worst when i would make it until abount noon and all of my joints were frozen in pain and when i have pneumonia and cant breath i always find myself at work. it is what i do.

leigh.

yes, i have issues.

[Gator]

Scratch that thing up top where I said I don't write a lot...

Delorisdoe - Nice meeting you. No, I haven't. was it good?

Sangye - Nice meeting you. It was impressive to myself too bc I am by no means an athlete. Thank you. But I did have to quit on that morning that I couldn't move anymore. The bad thing was after 6 long months of school I had to quit with exactly one week of school left, essentially doing everything except my final exams and state exams. The good news was before that I already knew that I didn't want to be a firefighter then so it was what it was. It was also a lot of fun and a way to do neat physical things.




I know that smoking while having this disease may not seem right and some may judge me as self-abusive or what have you, but it fits with me and I am helped by only having a mild form of WG. Pot helps me, as well I never have a problem eating. My Dr knows and has told me many times to keep doing what I'm doing (according to the blood and urine tests).

I will say it's weird too that when my WG started I was off pot for months (getting clean for fire school's urine test from late Nov 2009 till we were tested in March 2010 I was off it); when my flair up at the end happened I was off pot for a couple weeks bc of the 10+ day fever and all the pain and the rough-coughing that started.

Anyway, at that time it did help me quit the dip which between fear of cancer and never being able to successfully quit before, that was good. I was dipping on and off, mostly on, since I was 14yo and I believe if anything that dipping hurt me the most. I know it hurt my sinuses but I couldn't stop until I was forced to sit in a hospital for 5 days.

That said, I know you guys want to help and I do appreciate that. I do like that there is a community like this.

[Jack]

I think the term you are looking for is "explain" rather than "defend". You only have to do that if you are being attacked and that almost certainly won't happen on this forum. There is a pretty tolerant attitude here to all the choices that people make and most are more interested in hearing your story and point of view then in passing any judgement. We avoid the subjects of religion and politics, but pretty much anything else is welcome and you are free to ramble on as much as you like.

I used to smoke myself, but gave it up when I had children and I could never start again now because my lungs have since become wrecked.

[Sangye]

What is "dipping?"

[Gator]

I think the term you are looking for is "explain" rather than "defend". You only have to do that if you are being attacked and that almost certainly won't happen on this forum. There is a pretty tolerant attitude here to all the choices that people make and most are more interested in hearing your story and point of view then in passing any judgement. We avoid the subjects of religion, but politics and pretty much anything else is welcome and you are free to ramble on as much as you like.

I used to smoke myself, but gave it up when I had children and I could never start again now because my lungs have since become wrecked.

True, defend wasn't the best word. But I do tend to defend pot use a lot elsewhere, so that's more of what I meant. I'm not used to talking with others that have WG... I didn't mean to look on the defensive as much as I wanted to explain it and not sound bad.


Sangye - Dip (or dipping) is the disgusting habit of putting tobacco in your mouth and having it in there for 10-30 minutes;p not chewing it, just letting it rest while you spit out the juices. And repeating. It's gross, I was just addicted. I hated the stuff even though addiction tells you that you "want" it and can "control" it. It's popular in baseball and football (I picked it up in HS football practice). This link says it all: Dipping tobacco - Wikipedia, the free encyclopedia

[Sangye]

Eech. Definitely disgusting!