Lung inflammation question

[COWG]

Has anyone had WG in their lungs where it closes off your breathing? I've had WG 12 yrs and doctors
said this doesn't look typical of how WG effects lungs. Left lung breathing closed off and doing chemo and rituxin infusions. After 10 months there's no improvement.

[Pete]

Some folks on here have tracheal stenosis -narrowing of the windpipes - that generally occurs above the lungs. I would guess your docs have already checked for that.

Have you been evaluated for asthma? My disease has aggravated it. I'm currently taking 10 mg/day of Singulair for it. Was also on Asmanex (inhaled corticosteroid) until my doc agreed to see how I did without it (doing ok so far).

Welcome to the forum. I'm sure you'll get a lot of help here.

[COWG]

Thanks for the reply Pete. The Dr's only said it looked like a type of stenosis. The other WG symptoms haven't improved much w/ Rituxin and Cytoxin infusions. The wheezing and left lung blockage remains unchanged. Do you , (or anybody else) have any experience of how long the stenosis lasts? I've never reached remission in 12 yrs of having WG.

[annekat]

It could be that if you have been with the same docs for 12 years and there is little or no improvement, that you need some more expert advice. The Vasculitis Foundation website has a list of Medical Consultants under Support, and I'm not sure how it all works, but consultations between them and your docs should be free. Or you could try contacting them yourself if your docs won't... I don't know. You might be able to see some of these specialists.... if you are in Colorado, maybe the ones at Univ. of Utah or the Mayo Clinic in AZ, which both have been recommended by forum members. Or maybe your docs are just fine! You have been at this a long time and I'm sure have thought about the options. I just hope that there is a breakthrough in your case and you are able to feel a lot better soon.

[Pete]

Thanks for the reply Pete. The Dr's only said it looked like a type of stenosis. The other WG symptoms haven't improved much w/ Rituxin and Cytoxin infusions. The wheezing and left lung blockage remains unchanged. Do you , (or anybody else) have any experience of how long the stenosis lasts? I've never reached remission in 12 yrs of having WG.

Some other folks on here can probably speak from first-hand experience. My understanding is that stenosis is progressive and will not improve without treatment. Some people get periodic stretching of the trachea to open things up. Others have had stents inserted.

Hope this is correct and helpful.