sores in mouth from methotrexate

[Col 23]

Does sound like we need some bells and whistles, chocolate cake, strawberry daquiris, lemon cheesecake, champagne and music
and and..... getting carried away. All the best J and J.
cheers Col 23

[elephant]

I'm with you on all of that Col and sounds like your a party planner!

[Brooke]

Yay! Glad things are working

[Coco]

All of my wheezing and breathing problems were caused by my stenosis, which turned out to be a very easy fix!

I'm curious, what was the easy fix for stenosis? I"m battling it. Three surgeries so far and it grows back, although slower. I'm not taking any drugs, and have not been positively diagnosed with WG. 2 surgeons think I have it. A Rheumatologist thinks I have it. Not known for sure.

[elephant]

Coco my pulmonologist said if I started to show signs of sub glottal stenosis that he could dilate the area that is narrow. I personally would see Jan's doctor since he did a great job on her stenosis.

[Sangye]

I agree with Elephant about seeing Jan's doc. I hope she'll see your post and answer it. She's educated herself quite thoroughly on SS and will be able to help you.

[JanW]

Hi, guys --

My doctor, Robert Leibovics 212 262 4444, was a wonderful surgeon and one of three in the world who correct SS in his particular way. He was trained in the technique at NIH. To describe it he goes in and makes incisions at the "points of maximum tension" so that when the skin snaps back it opens wide (picture stretching a rubber band and cutting it). So he makes a bunch of incisions like this in the scar tissue and then puts a balloon in and dilates for as long as he can stop your breathing (anywhere up to three minutes and when your pulse ox goes below 92 they take it out). Then they coat with myomicin (chemo) and pred, put in a breathing tube and then wake you up. You stay in the hospital overnight (on painkillers, pred and antibiotics) and then when you get out it's without any medication. It was pretty terrific. I will have to have the surgery again -- he has suggested that in as little as 3 to 4 months I'll need a 'touch up' but he has had patients go as long as two years (the woman he was operating on after me -- my husband met her in the waiting room). My rheumy says that he keeps sending him letters say how well the surgery went and how I was such a great candidate -- I'm 44 and have minimal WG symptoms and am otherwise in good health.

So when I say it was a quick fix, I luckily have good insurance that pays for this procedure, live close to the expert on SS in the US and there is no discomfort with the surgery. I know I will have to have it done maybe one or two more times, but that's nothing like what some people on this board have been through. My surgeon would say that no real WG patient has had this done only once. Because my biopsy didn't show WG, he works with my rheumy's diagnosis (which is based on ANCA, P3 and I have a saddle nose -- lucky me) My windpipe as about a 3 and should have been an 8. My surgeon has operated on people as low as a 2. He hasn't trached a patient in 10 years, and has never lost a patient in surgery (and some have performing this surgery -- the #1 complication is death).

How have your surgeries been performed Coco? What do they think you have if not WG?

[pberggren1]

Coco:

What symptoms do you have right now and have had in the past?

Did you ever had a biopsy?

Have you had sinus, lung or kidney involvement?