New Weggies from Wisconsin

[Bren]

Hi,
I m new to this web site. I was dx with Limited Wegners in 2008 I have had 2 surgery's on my trachea , I have Subglotic Stenois, I m about 60% open at this time I was on Meth for 1 year now on Cytoxon they feel I am having a flare as I went to my ENT Dr in Aug and I looked really good! by the end of Nov and with problems breathing, I went back to the ENT Dr, he scoped me, he notices I had swelling in my trachea area, that is when they put me on Cytoxon, have been on that for about a month, has anyone experienced body joint, aches with Cytoxon? i have experienced it the worse..

it took 8 years for them to dx me.. my Dr feel I don't have Limitied Wegners as my C-ANCA is not positive but my P-ANCA is, I have many symptoms. the Subglotic Stenois, major Crusting in the nose,nose bleeds, sores in my nose, on my body, mouth, strawberry gums, & ear problems, I can hear, but I have swishing, ear goes plugged, I hear my heart beat ect.. My Rhym feels if my C-ANCA is not positive he can not properly dx with Limited Wegners. He is treating me as If I have Wegners.. I got a 2nd opion from Dr Speck @ Mayo in Rochester, MN. He totally agrees I have Limited Wegners. and asked why they will not dx as that.. I explain to him how my rhym Dr feels.

Does anyone know anything on stomach issues and Wegners. I have been struggling with l feel it maybe an ulcer, with the symptoms. but don't want to have any test done, as I always study hard for my test and I pass!! like (CT, PFT, x-rays, hearing) but have so many symptoms:predrage:

I have had 7 UTI in the last year, does anyone know if that is related to Wegners?

Just a brief history on me.. I would like to know more about Subglotic and Limited Wegners I here that is rarer then just Wegners. which is rare "we are just a special group of people"

love to hear from anyone that has what I have or more :biggrin1:
New Weggie from WI - Bren

[Sangye]

Hi Bren, it's nice to meet you. Here is some info just for you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

JanW is our group's expert on stenosis issues. She sees one of the leading specialists in it and has accumulated a great deal of knowledge about it.

As the link above indicates, I feel you should continue to work with Dr Specks as your main doc. How often can you get there? I only need to see my Wegs rheumy at JHU every 3 months, including when I've had severe disease activity.

Are you drinking tons of water with the cytoxan/ctx? Did you have UTIs before you started ctx? Are you taking your ctx with food, and are you splitting up the daily dose? When I took ctx I could only tolerate 50mg 3 times a day. Taking 100mg or more at a time gave me terrible stomach pain.

[JanW]

Yes, Sangye is right, I have SGS and have already had one surgical repair. So far I have remained largely open (about 7 mm) for 10 months. I hope to be one of the few who can get away with one surgery. I don't have much tracheal involvement -- only the first two rings are involved.

It's great that you are seeing Dr. Specks since he is a pulmonologist and therefore can really advice more about the tracheal area. My doc, Dr. Robert Lebovics, specializes in the subglottic region, and does any surgery that involves a great deal of the trachea with a thoracic surgeon, since this is more their area of expertise. I'm sure you will get some great answers there.

I can't advise about any of the drugs, since I have only been on mtx since diagnosis. I was told pretty firmly, however, that WG remission was necessary for it's own sake and would likely not affect the state of my throat (which unfortunately seems to change at it's own rate, mostly unrelated to disease activity.

[Bren]

I had the UTI's before CTX, yes I m taking it with food.. I can't see Dr Speck due to Insurance, I took me 3 times of denials from my Insurance company, to get there, for 2nd opion and my Rhym Dr still don't agree? Dr Speck wrote a letter explain why he felt I had Limited Wegners.. :unsure: I have been dx with Sjorgen's Syndrome along with Raynaud's, with all of my other issues, to top it all off I m in pre menopause!!!!:confused1:
thanks for your response

[dunkie2202]

Hey Bren , welcome to the forum. I don't know much about the Cytoxin tablets but I can tell you about the Cytoxin IV which is what they started me on. I've just finished my 6th dose. You do have to drink an abundance of water so the Cytoxin doesn't sit in your bladder and you must empty your bladder as soon as you get the urge. Fact : Cytoxin will bring on menopause... As if we don't go through enough sh^t, my hot flashes started three weeks ago.
Wishing you all the best :smile1:

[Sangye]

Bren, see if you can get Dr Specks to consult (for free) with your rheumy on a regular basis. He's a VF doc and that's a service they offer.

[jola57]

Hi Bren and welcome. I have been on cytox for 2 years but I am lucky and do not have bad side effect. My assumption would be that if you were getting UTI before, now with your immune system downit would be easier for you to get it. you are in good hands with JanW and Sangye and if you look at some of our stories and forums topics you will find most of your questions answered