Methotrexate not working -

[JanW]

I of course defer to the experts at Mayo (and I remember you telling me that your peak flow is about 400 so it doesn't seem as though you are in any immediate danger) but you don't have to wait until your WGs isn't active before having this surgery. For some of us, WGs will always be active and we will always on medication. I stress this because I know that others have been told (I'm looking at you ticklytoes) that they can't have surgery with active WG because it will just come back. Well, it will or it won't but that's not determined by the progression of the systemic disease. When I expressed surprise to my surgeon that he would operate on me newly diagnosed and as yet medically untreated he replied, "We (meaning surgeons) operate on people who are half dead all of the time, and you're not even that." He then followed it up with the old joke about "why do they nail cancer patients' coffins shut?" "so the oncologists can't get one last round in!" Sorry if this offends anyone, but my only point is is that when this surgery is urgent enough you do it as long as you believe that the patient will get out alive, regardless of what other stuff is going on. And as you have read, there are people on these boards who have surgeries similiar to my own done several times.

[elephant]

Well stated Jan, and it makes sense especially when your dealing with the windpipe to keep you alive. In my case it was the maxillary sinus ( I had four surgeries) and everytime the surgeon went in to clean it out and open it up it would close back in 4 weeks! My disease was active and was not on medicine for the WG because no one knew I had it.

[Jack]

I was on the transplant waiting list while still having regular flares and had a couple of them after transplant, but no harm was done.

[JanW]

The surgeon described it as the doctors' ABCs -- A - establish an airway, B stop the bleeding, C control the circulation (blood pressure, etc.). There is nothing more important that your airway. No life without breath.

[Brooke]

I am anxious to see how my windpipe looks compared to last September, 2009. In September, doctor at mayo said I have scarring and narrowing but said that it wasn't so bad that I needed surgery right away.

[JanW]

The thing is that they never know how quickly something like this is going to progress...but it's definitely time to have it looked at again. Particularly if you seem to be feeling new symptoms. I noticed that I was getting increasingly short of breath in the last six months despite the fact that I was moving around very little due to problems with my ankle. The nurses were surprised that I could even breathe easily while lying down, but I could (although nothing compared to what I can do now).

[Brooke]

Thanks Jan, I will be sure to get it checked out This isn't a new symptom to me, it just seems it was better for a while and now back to where I was. It seems like every week is different for me, some days are good and some are not. The minute I think I am getting better, for example I might have great nights sleep - well then the next night I'm coughing again!

[JanW]

Definitely the same here. It's also more difficult to clear your throat when you have a stenosis -- so there's that problem as well.

[Brooke]

Jan~
Do you ever cough "stuff" up or just have a cough? I do a lot, it is clear sometimes whitish in color. I am thinking it is my sinus drainage that gets into my chest.

[Sangye]

Wow-- this is a GREAT thread! Jan, you've got so much useful info about SS. I LOVE the onco joke. Never heard that one, but it's so true! My hematologist/oncologist keeps telling my Wegs doc to do more rtx infusions. I've told him the Weggie protocol is 4 infusions every 4-9 months. He says "Nah, we give NHL patients 16 infusions at a time!" Wegs ain't NHL.

Brooke, last September is a long way back in Weggie Time. If your Wegs hasn't been responding well to mtx, there very well could have been progression of the SS. If you were just going to a local rheumy and ENT I'd be worried. But I know you're in good hands at Mayo. Like Elephant said, you have many treatment options. Don't worry about which one. Just take it one step at a time.