Introduction

[ChrisV]

Hello all, I'm new here! My name is Chris and I live in Salt Lake City, Utah.

Short wegner's bio:

I've had a long relationship with polyangiitis-with-whatever-this-disease-is-called, but I wasn't diagnosed until Dec of 09. I went into the ER on Christmas day in 2009 thinking I probably had swine flu or pneumonia, but nothing they were doing helped at all. I was getting worse every hour. After a few days I was pretty sure I wasn't going to make it out of there. Luckily after about 5 days sliding downhill, a Rheumy walked into my room and said, "I treat weird diseases that are hard to diagnose."

"You're going to love me." I responded.

He took me off of the IV antibiotics, replaced it with 1000mg of Solumedrol, and I've been a weggie ever since. I was 30 at the time.

I have been trying to force remission ever since with mixed success. I've been on 2 rounds of Rituxan, lots of Predisone (less the many here, thank goodness), Cellcept (briefly, slept the whole time), Immuran, Immuran/Allopurinol cocktail, and Methotrexate. Right now I'm riding a wave of Rituxan and my goal is to get off of the meds all together (don't tell my doctors). Also a really fun (leaky) lung biopsy and sinus surgery in there. Exciting 3 years!

I have had involvement in eyes, skin, lungs, kidneys and sinuses. Sinuses are by far most affected, and the only current area affected. I have a perforation in my septum about the size of dime.

I think the thing that drew me here to the board was when I realized that an end to this isn't a few months around the corner. I think I just barely accepted that fact. I always kind of expected that I would be able to force remission, and then go back to a normal life, but healthier without any of the Wegener's symptoms. I thought I was there about 10 months after being diagnosed, but quickly had some brutal times in the nose. Now I'm doing much better but my doc is very clear that he doesn't see a future without major meds for me. I HATE the medicine! Granted it keeps me above ground, but I'm more interested in thriving than surviving.

So I found all you guys to share who the best doctors are, what are the best books to read, and what treatments work for this rare disease that no one really understands.

Right now I'm really into the idea of trying to treat the disease with a healthy diet, exercise, meditation, and mindfulness, so I'm going to explore that and if anyone is interested I'll share results along the way.

2013 is going to be the year I kicked this disease in the trash.

Thanks for reading, looking forward to getting to know the community.

[mishb]

Welcome ChrisV, glad you are here.

Most people can relate to your story and I like the idea that 2013 is the year to kick it to the trash :thumbsup:

When I was first diagnosed in 2010, I told everyone that I would be fine and off all medications by 2011.....give me a couple of months and I'll beat this thing.
Well I'm still trying to beat it and just now starting to reduce the pred from 5mg to 2.5mg

On another thread I said that 2013 was when all of us become pain free and none of us will be in hospital this year.....that is still the plan

Take care and remember to......

[Geoff]

Hi Chris,

Feel your pain and frustartion but like your positive comment " wanna be thriving not just surviving"

Like you I thought I would get back to a normal life and set myself targets to achieve, which I did; however the roller coaster keeps rolling which at least makes you appreciate the high points!!

All the very best and keep us posted.

[Dirty Don]

Welcome to the little forum that could...or at least really wants to ChrisV. Lots of knowlege, experience, and help on here from those who know! LOL! I certainly understand your frustration...seems like you are a bit behind in dealing with WG due to not being diagnosed early...that's OK, some never get there, and love your attitude...but WG doesn't go away...maybe YOU could be the first! Anyway, get used to the drugs, the rollercoaster (price of the ticket was cheap, eh?), the general 'difference' even on good days that you experience. Basically, you may kick all you want, but until the ubiquitous 'they' get a drug or procedure on the market that can go right to the heart of this disease, your kicking will be just good exercise...but that's good too! The best to you, keep asking questions, fighting back, and most of all, remember that you really are sick, but you can deal with it...

[annekat]

Hi, Chris,

Welcome to this great forum, and I hope we hear a lot more from you. Seeing that you live in Salt Lake City, you are lucky, because that is the location of one of the few vasculitis specialist centers in the western US. Several of us have been to see Dr. Koening there at the U. of Utah center. I'm not one of them, yet, anyway, as I live in western Washington state and it is too much of a trip for me at this point. Keep us posted on how it goes for you!

[Psyborg]

Welcome to the Forum Chris!

[Debbie C]

Hi Chris and unfortunately welcome !! I'm alot like you ,I don't due these drugs well that's why so far ( I go back to the Cleveland Clinic on Mon. ) I am only on 5 mg. pred. But thank God all my bloodwork and test are coming back good,except for the endoscopy I just had..the pred seems to be messing up my esophogus and lining in my stomach. So I am going to see again if he will start reducing it,but he keeps saying that is the only thing keeping me in remission.I am also trying to live healthier,doing yoga,watching what I eat, eating alot more fresh fruits and veggies and certain teas.I too plan on kicking this disease in the ass and not by taking all the drugs they keep pushing on me. If it were up to him( my reumy ) I would either be on cellcept,imuran,bactrim or another round of rtx and I said for what everything keeps coming back good if things change we'll go from there but I'm not going to be a guinny pig to see if this works if I fell fine.So keep us posted on how u are doing.

[Dirty Don]

..the pred seems to be messing up my esophogus and lining in my stomach. So I am going to see again if he will start reducing it,but he keeps saying that is the only thing keeping me in remission.

Good on the 'healthy' Deb...it's not easy doing that consistently. I'm still on pred (down to 4mg/day!) and still have esophogeal stuff such as 'irritated' non-productive coughing for no reason & my stomach is upset most days. But, rather than thinking reducing at this point as your doc advised against...the same doc should also be providing 'counter active' drugs to help the stomach at least. I'm on Protonix...stopped it once, haven't done that again while still on pred! Seems not much can be done for cough cept keeping it soothed. Something to think about if you haven't done so already...feel better!

[JeanMarie]

Debra, Welcome to the forum & I hope your wish for a healthy 2013 comes true!!

[Debbie C]

Hey Don...are u on anything else besides the pred now ?? I see the doc that did the endo tomorrow, he did prescribe carafate for me to take 4 times a day which coates your stomach..it does help alot BUT I have only been taking it twice a day so far bacause the timing is bad. Can't eat 1 hr before or 2 -3 hours after and can't take any other pills for a least an hour after..so I have to work on the timing.I am also taking Pepcid AC but he said he wants me to be on something else..I'll see tomorrow.

[ArlaMo]

Welcome Chris. I just got back home from SLC on Monday. Saw Dr. Koening at the U of U while I was down there.

I think a lot of us can relate to thinking we're going to get back to normal. I had a brief remission after being diagnosed in April of 2010, but it wasn't very "normal." I'm really hoping a maintenance schedule of rtx infusions can get me much closer to normal this time :tongue1:

[ChrisV]

Hi, Chris,

Welcome to this great forum, and I hope we hear a lot more from you. Seeing that you live in Salt Lake City, you are lucky, because that is the location of one of the few vasculitis specialist centers in the western US. Several of us have been to see Dr. Koening there at the U. of Utah center. I'm not one of them, yet, anyway, as I live in western Washington state and it is too much of a trip for me at this point. Keep us posted on how it goes for you!

Yes I've heard about the Vasculitis Center at the U of U (my alma mater) but I've never been there. I'm still with the Rheumy that diagnosed me, who happened to be the guy who did rounds at the place I was hospitalized, the hospital run by my insurance provider (Intermountain Medical Center). But I'm thinking of switching, and I may pursue the U of U. I don't think it's covered under my plan, which has a several thousand $ out of pocket ded. for out of network. But I guess at least I don't have to pay travel!

[ChrisV]

Have you seen Dr. Koening before? If so, I guess you must like him to travel to see him?

Sorry you had to visit our filthy valley--the air here absolutely kills my lungs and sinuses this time of year! Salt Lake is the most beautiful place in the country 10 months out of the year, but Jan & Feb are UGLY in valley (but if you want to ski, the mountains are beautiful year round).

[ChrisV]

Nvrmind, found this (http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/2805-very-positive-experience-dr-koening-u-u-vasculitis-center.html#post65159). Good luck w/ dr. K! I have a friend who is a doc at Moran (she's now a surgeon, wouldn't see her unless you got something jammed in there). I actually went there before I was dx when I had slceritis that would never go away. It's a very nice place.

[annekat]

Have you seen Dr. Koening before? If so, I guess you must like him to travel to see him?

Sorry you had to visit our filthy valley--the air here absolutely kills my lungs and sinuses this time of year! Salt Lake is the most beautiful place in the country 10 months out of the year, but Jan & Feb are UGLY in valley (but if you want to ski, the mountains are beautiful year round). What makes it filthy? People using wood stoves for heat, or am I overlooking something? Traffic, maybe.

If you do a search on Dr. Koening's name, you should find some posts in the archives from people who've seen him. He does have a good reputation.

[dennis2512]

welcome, this site has given me alot of comfort during my husbands journey with this disease. crissie and dennis hohenberger

[ChrisV]

What makes it filthy? People using wood stoves for heat, or am I overlooking something? Traffic, maybe.

If you do a search on Dr. Koening's name, you should find some posts in the archives from people who've seen him. He does have a good reputation.

The cold weather creates a condition where a "lid" of cold air covers our valley, and the pollution cannot escape (an inversion). It's a relatively small city, but all of the pollution gets trapped and it becomes smothering. Driving out of the canyon back into the valley I can literally feel my lungs and nose start to sting and within a few minutes I have a headache.

Here's an article in today's local paper (http://www.sltrib.com/sltrib/politics/55599024-90/pollution-utah-http-www.html.csp) if you're interested.

[annekat]

Thanks, Chris! I looked at the article, and it IS very interesting! I have lived in places where those inversion layers sometimes occur, though probably not as severe in impact or as predictable. I guess I'd been naively thinking that SLC, although a city, would be clean and pure due to its mountainous location. This is a good thing to know in case I ever go there! Will plan my trip for a different time of year.

[jola57]

Welcome Chris, you will be in good hands, both from your doc and from us here

[Jaha]

Chris,

Welcome to the greatest resource of info. It has been the best thing I have done for myself mentally and physically, when I united with these great friends,whom are trying to help one another get thru our ups and downs with this journey.
Jana

[Shannon]

Welcome Chris,

I was diagnosed in 2005 and went for a nine-month period drug-free. I've learned in the 7 years since I was diagnosed that taking a little medication each day/week keeps me more normal now than being medication-free did. I'm still always asking my doctor if it's time to take me off and try it again. The last time I did that it ended with me in the ER coughing up blood so he feels a little prednisone and small dose of Methotrexate is keeping everything at bay. it's just amazing to me how fast our bodies can flare. I hope to read soon that you have achieved your goal. No two diseases act the same way. I love the positive outlook.

Shannon