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. :smile1:

[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...:wink1:

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 (http://en.wikipedia.org/wiki/Dipping_tobacco)

[Sangye]

Eech. Definitely disgusting! :laugh:

[delorisdoe]

lolololololololol

[NicShaf]

Welcome to the site Gator. I'm also 27yr old, diagnosed with WG in December2010. It sounds like you have a more mild case of WG, not too dissimilar from my own case. I'm still on CTX, Preds and bactrim, but doing pretty well considering everything. It's great to hear you're off CTX & Preds so soon, and it sounds like you're doing good. Keep up the good work:)

[elephant]

Gator, thanks for sharing your story. How much Bactrim do you take? Do you take Bactrim daily?

[Gator]

NicShaf - Thank you. Very kind of you. Let me know if you have any questions. Are you getting the cramps (real bad with the jaw, calves, ect) or headaches? How much prednisone are you on and are you decreasing it? How did you figure out you had WG? It felt great to get off those meds. The burning bladder and urethra alone made me anticipate it a lot, even effecting sleep since you always feel you have to go. Good luck and stay healthy.

I made some changes. Went from a chicken meals and junk food diet to a chicken meals, junk food, OJ, V-8 juice, V-8 fussion, and B vitamins diet. I did 1000mg calcium pills for a while but now stick with icecream and chocolate milk, OJ w/ Ca++, and so on. I was afraid of kidney stones. On second thought, maybe I'm not the best to talk to. Haha. But I'll make changes soon here to be more healthy.

[Gator]

Gator, thanks for sharing your story. How much Bactrim do you take? Do you take Bactrim daily?
Was a pleasure. It just says DS (double strength). I do them Mon, Wed, and Fri. And 150mg imuran everyday.

[Sangye]

Gator I hate to tell you but V-8 juice is junk food.

There's no way you can get enough calcium from ice cream and milk. If eating dairy were sufficient, then Americans wouldn't have so much osteoporosis. Take a good calcium supplement and make sure your docs are testing your vitamin D levels, too.

[Chris G]

Welcome Gator. You've come to the right place for advice and support. These people are all wonderful.

I don't have lung involvement myself, but I do have shortness of breath occasionally, and I tend to get bad coughs. Smoking with your lung involvement really scares me. You mentioned, that earlier on you could not afford the cost of ingesting. Has that changed? Are you able to ingest more than smoke now?

Congrats on kicking the dip habit!!

[NicShaf]

NicShaf - Thank you. Very kind of you. Let me know if you have any questions. Are you getting the cramps (real bad with the jaw, calves, ect) or headaches? How much prednisone are you on and are you decreasing it? How did you figure out you had WG? It felt great to get off those meds. The burning bladder and urethra alone made me anticipate it a lot, even effecting sleep since you always feel you have to go. Good luck and stay healthy.

I get some leg cramps, but if I go for a walk daily and stretch, they feel better. Occasional headaches. I'm currently on 30mg Preds daily, I've been working down from 60mg since January. I had cold like symptoms of a cold since Sept2010, and by December they admitted me into the hospital with pneumonia/ cavitary lesions in my lung. My Pulmonary doctor diagnosed me while I was in the hospital for about 4-5 days. I'm hoping to be off Ctx around June. They tell me my age is on my side for recovery and remission, it sounds like you're on the right track, it's encouraging to hear:)

[vincelv]

hey i understand..im 26 got the wegners..mostly sinuses and eye involvement but sinus rinse helps alot if used everyday.im at 25mg of pred..and still at 175mg of cytoxan.and down too one eye drop a day...but im hoping too be off the pred soo..i still havent gotten sick on meds..its like a maricle cuz i work front end cashier at walmart..lol on one eye..wegs took my right eye before i got diagnosed..but im just lucky the meds are working..just scared anytime my other eye gets red cuz i dont want to loose that one too..

[Gator]

Gator I hate to tell you but V-8 juice is junk food.

There's no way you can get enough calcium from ice cream and milk. If eating dairy were sufficient, then Americans wouldn't have so much osteoporosis. Take a good calcium supplement and make sure your docs are testing your vitamin D levels, too.
I took your calcium comment to heart and took a 500mg pill for the 1st time in months. I do worry about kidney stones though. As for milk, OJ, ect, it is 200-500mg Ca++ per one of my sevings so I get a fair amount but not really in the 1200mg or more a day category.

But the V-8 part, :flapper: It's all relative. I don't know your diet, but mine has no fruit and about a 1/2 serving vegetables and the V-8 really helps fill in the gaps. -I'm quite certain it isn't junk food to me. Now, my 1-2 coca colas a day, I'll give you that. :biggrin1:

[Gator]

Welcome Gator. You've come to the right place for advice and support. These people are all wonderful.

I don't have lung involvement myself, but I do have shortness of breath occasionally, and I tend to get bad coughs. Smoking with your lung involvement really scares me. You mentioned, that earlier on you could not afford the cost of ingesting. Has that changed? Are you able to ingest more than smoke now?

Congrats on kicking the dip habit!!
Thank you.

No, money with me is still very tight. And when I ingest, it seems so much must be wasted (it's not how I'm cooking, I have that down) in efficiency compared to inhaled (i.e., it may take 0.3 grams in a smoked bowl to work vs 1 gram ingested, or such). I really do enjoy smoking too so that plays into it: the instantaneous effects, smell, ect. I don't know. I do like ingesting and understand it can last longer, but I just rarely do cook with it and haven't in a while.

[Gator]

I get some leg cramps, but if I go for a walk daily and stretch, they feel better. Occasional headaches. I'm currently on 30mg Preds daily, I've been working down from 60mg since January. I had cold like symptoms of a cold since Sept2010, and by December they admitted me into the hospital with pneumonia/ cavitary lesions in my lung. My Pulmonary doctor diagnosed me while I was in the hospital for about 4-5 days. I'm hoping to be off Ctx around June. They tell me my age is on my side for recovery and remission, it sounds like you're on the right track, it's encouraging to hear:)
That all sounds pretty good or normal. I think you're lucky like me in finding it early! Now you can tell people like me that, "I'm one of the luckiest, unluckiest bastards around." :) But that is good.

I hope your road to remission is fast and smooth!

[Gator]

hey i understand..im 26 got the wegners..mostly sinuses and eye involvement but sinus rinse helps alot if used everyday.im at 25mg of pred..and still at 175mg of cytoxan.and down too one eye drop a day...but im hoping too be off the pred soo..i still havent gotten sick on meds..its like a maricle cuz i work front end cashier at walmart..lol on one eye..wegs took my right eye before i got diagnosed..but im just lucky the meds are working..just scared anytime my other eye gets red cuz i dont want to loose that one too..
OMG! Sorry about your eye. That is rough, no side stepping around that. It's good you can still see. I had some eye stuff but petty in comparison. I think just slightly- stratched and irritated scalara. I saw an eye dr for a few months around being diagnosed (my eyes became very sensitive and were each half red semi-circles with the red on the periphery) and he prescribed prednisone drops that cleared mine up.

Man, I hope you don't lose your other eye too. I don't think you will. It seems that most of the damage I've read about was before diagnosed. I think the cytoxins do their job to a T. I like to wash my hands when I get home after dealing with money... I wanted to say that if you use that hand sanitizer stuff, to ask your dr about it bc I've heard different things but all seem to lean towards that stuff in large quantities can either become harmful or it defeats its purpose bc it stops killing germs (... or something. Like I said, ask a professional :) )

Anyway, I haven't been sick either (besides once having stomach flu) since diagnosed so I hope we keep that in common too. I know I've been lucky so far, but I do other precautions like use the alcohol wipes at grocery stores to clean the cart's handles, for example. But when my niece and nephew visited they got everyone sick that watched them but me, so I'm definitely lucky so far. Good luck.

[Sangye]

Gator, the form that the calcium is in (and other factors) affects how much of it is absorbed. So 2 foods may each have 900 mg calcium but the absorbed amount can be quite different. The calcium in dairy is poorly absorbed. The best form of calcium in the diet is what occurs naturally in most dark green leafy vegetables. This is how many MDs misdirect their patients-- they just add up the stated mg of calcium in foods and tell their patients to go eat 1,200mg worth and wonder why their offices are filled with people who have osteoporosis.

You should not be concerned about getting kidney stones from taking a good calcium supplement and eating calcium-rich foods. That has no scientific basis.

Wegs and the drugs are incredibly rough on the body--it goes beyond the symptoms and side effects. I suggest you take this opportunity to clean up your diet and work on other habits that are detrimental to your health. I guarantee it'll make a huge difference in the short and long-term.

[NicShaf]

Now you can tell people like me that, "I'm one of the luckiest, unluckiest bastards around." :)

I like this, sums it up perfect! LOL

[NicShaf]

hey i understand..im 26 got the wegners..mostly sinuses and eye involvement but sinus rinse helps alot if used everyday.im at 25mg of pred..and still at 175mg of cytoxan.and down too one eye drop a day...but im hoping too be off the pred soo..i still havent gotten sick on meds..its like a maricle cuz i work front end cashier at walmart..lol on one eye..wegs took my right eye before i got diagnosed..but im just lucky the meds are working..just scared anytime my other eye gets red cuz i dont want to loose that one too..

vincelv,
That's great to hear that you haven't gotten sick at all while on CTX, espeically since you work with the public on a daily basis. Besides your eye, how are you feeling?

[drz]

hey i understand..im 26 got the wegners..mostly sinuses and eye involvement but sinus rinse helps alot if used everyday.im at 25mg of pred..and still at 175mg of cytoxan.and down too one eye drop a day...but im hoping too be off the pred soo..i still havent gotten sick on meds..its like a maricle cuz i work front end cashier at walmart..lol on one eye..wegs took my right eye before i got diagnosed..but im just lucky the meds are working..just scared anytime my other eye gets red cuz i dont want to loose that one too..

I remember on my first out patient visit when my rheumatologist told I need to find an eye doctor that would see me quickly if I had any eye symptoms. He said you have lost your hearing so we will try save your vision. Boy that got my attention.

Went to eye doctor today for that reason. It felt like when I had scerlitis a few weeks before they finally figured out I had Wegs. My eye is weeping, looks red and feels sore. The doctor didn't see any signs of inflammation today but said Wegs can cause one to start having such symptoms and they might not show up for a few days. He thought it was an infection though and started treatment for that. I will go back in three days. If it is an infection it should be greatly improved. If it is the Wegs it won't be or it will get worse and then we will do the steroid treatment.

When I think about how little I can actually do these days and how much of my current time is spent trying to manage the Wegs, I really wonder what did I do with all that extra time I used to have before Wegs.

[Gator]

Gator, the form that the calcium is in (and other factors) affects how much of it is absorbed. So 2 foods may each have 900 mg calcium but the absorbed amount can be quite different. The calcium in dairy is poorly absorbed. The best form of calcium in the diet is what occurs naturally in most dark green leafy vegetables. This is how many MDs misdirect their patients-- they just add up the stated mg of calcium in foods and tell their patients to go eat 1,200mg worth and wonder why their offices are filled with people who have osteoporosis.

You should not be concerned about getting kidney stones from taking a good calcium supplement and eating calcium-rich foods. That has no scientific basis.

Wegs and the drugs are incredibly rough on the body--it goes beyond the symptoms and side effects. I suggest you take this opportunity to clean up your diet and work on other habits that are detrimental to your health. I guarantee it'll make a huge difference in the short and long-term.
I use naturally-derived calcium -the one you should take with food and of lower quality. I may look into the Chelated calcium (calcium citrate) ones though, depending on price and so on. What do you think?

This was interesting, yet non conclusive: Is it better to take multiple calcium supplements during the day? Does eating food with calcium help prevent kidney stones? I need to read more but this is interesting...

Does high calcium intake cause kidney stones? (Calcium curious (http://www.health.harvard.edu/fhg/updates/calcium-curious.shtml)) About 80% of the time kidney stones are made of calcium, so on the surface it makes sense that calcium intake might cause stones. But studies going back to the 1990s have shown just the opposite: high calcium intake, if it comes from food, makes developing a kidney stone less likely. One possible explanation is that calcium retards the absorption of oxalate, a molecule that often mixes with calcium to cause kidney stones.
Several studies have found that calcium supplements, in contrast to calcium from food, are associated with a slight increase in the risk for kidney stones. Researchers have speculated that if people take calcium pills separately from meals, or at just one meal a day (typically breakfast), then calcium may be absent from the gut much of the time and not available for oxalate-blocking duties.

Changing my diet would be good. I'm trying to slowly quit coke bc I have diabetes in my genes, and I do eat more fruit in the spring, but should more always.... I haven't got the stomach to start eating fish and red meat yet though, and my lunches and dinners are already healthy, but can also clean up things like snacks at nights.

[Sangye]

If you're taking a quality calcium supplement you can take it with or without food and not develop kidney stones. The problem with medical folks doing nutrition research is that they usually use poor quality supplements and don't use the same type in each study.

Good for you for cleaning up your diet, Gator. :thumbsup:

[Palmyra]

Gator,
Glad you were able to quit the dip, as it is very difficult to quit. You must have been very determined (I am a dental professional, so will give you extra applause for quiting:thumbsup: ) Sugarless mints/gum are good substitutes if you ever get cravings for that tobacco.

Good luck with your ongoing progress, and I hope things continue to get better for you.

[Gator]

Gator,
Glad you were able to quit the dip, as it is very difficult to quit. You must have been very determined (I am a dental professional, so will give you extra applause for quiting:thumbsup: ) Sugarless mints/gum are good substitutes if you ever get cravings for that tobacco.

Good luck with your ongoing progress, and I hope things continue to get better for you.
Thank you. Thanks for reading my story. It was rough, the dependence, but the urges weren't as bad as the other times I quit it. I think I was over it. I used the nicotine patches (and later gum) starting in the hospital. I did chew gum for a while after I quit the nicotine gum.