Saw the immunologist today

[andrew]

Had my quarterly checkup this morning. Most of my bloods are looking pretty good...well...good for me despite the fact I feel like crud. Apparently due to the immunosupression, asthma and the fact that I didn't have my flu shot this year (d'oh!), the initial infection and what follows has hit me extremely hard. He's a little concerned I may have tracheal stenosis due to my breathing issues however I have been put on 5mg Pred daily for two weeks to a month to see how I go. If I'm not better in a month he's going to arrange some dude to force a camera down my throat :-) Sounds like fun lol. I've had it before so not too concerned about the procedure, more about the possible stenosis.

Good news was that my Creatinine is waaaay down and well within normal range which is great.

[elephant]

Hope the prednisone works for you. Think positive visual thoughts on those WG @#%%!

[drz]

Had my quarterly checkup this morning. Most of my bloods are looking pretty good...well...good for me despite the fact I feel like crud. Apparently due to the immunosupression, asthma and the fact that I didn't have my flu shot this year (d'oh!), the initial infection and what follows has hit me extremely hard. He's a little concerned I may have tracheal stenosis due to my breathing issues however I have been put on 5mg Pred daily for two weeks to a month to see how I go. If I'm not better in a month he's going to arrange some dude to force a camera down my throat :-) Sounds like fun lol. I've had it before so not too concerned about the procedure, more about the possible stenosis.

Good news was that my Creatinine is waaaay down and well within normal range which is great.

How does the scopeing of throat leaave you feeling? I am having it done tomorrow morning to check for damage to cartilage. One doctor noticed sensitive area in throat and observed my voice has changed since last admission here.

[Jack]

I had no ill effects (and no memory of what happened) from mine, but others have had a sore throat for a couple of days and can remember it all. There does not seem to be much consistancy.

[andrew]

How does the scopeing of throat leaave you feeling? I am having it done tomorrow morning to check for damage to cartilage. One doctor noticed sensitive area in throat and observed my voice has changed since last admission here.

I had no problems at all. I watched the video as they were looking around. Walked out no problem. Think they put you into a 'twilight' state with a light anaesthetic. Some will remember it and some won't. I had no discomfort during or after.

[LisaMarie]

Andrew
My Throat specialist put me on an inhaled steriod flovent when my stenosis started flaring again and it has slowed it down..but I could only use it for 2 weeks and can not do it again for 3-5 months is his perferrence...I do fine with my scopes...he sprqays some nasty stuff done my nose to numb it and decrease inflammation then runs it down.....the hardest part is not to swallow when he goes past my vocal cords ...you know telll me not to do some ...and all I wanna do is do it...lol.......

[andrew]

Andrew
My Throat specialist put me on an inhaled steriod flovent when my stenosis started flaring again and it has slowed it down..

Yeah I'm currently on Symbicort which is helping a lot and I'm sure will help even more in addition to the Pred when the remnants of the infection finally go away.

[JanW]

Scoping (which I have done at least every six weeks) isn't so bad, although I absolutely hate the gaggy feeling. My ENT can get all the way down to the first couple of rings of my trachea. Below that they would sedate you, but I've had other less expert ENTs not even be able to go that far because I've started gagging too much.

I would be cautious, however, about steroids or other medications in the fight against stenosis. While most of us have to be on steroids and immunosuppressants to fight this disease, stenosis has a life of its own beyond the WG for reasons that are not understood. Research doesn't support any medical therapy to retard or limit stenosis. If it gets bad enough you have surgery, and if you are the typical weggie you will have more than one surgery. My WG could be flaring and it not affect my stenosis at all. My stenosis could be outrageous and my numbers be just fine. The WG triggered the stenosis clearly, but after that it just does whatever its going to do. I'm on no steroids whatsoever, and my mtx is just to get me into a non-inflammatory state (which I am) but (no surprises here) my stenosis is slowly coming back (three months post surgery).

[andrew]

I would be cautious, however, about steroids or other medications in the fight against stenosis. While most of us have to be on steroids and immunosuppressants to fight this disease, stenosis has a life of its own beyond the WG for reasons that are not understood. Research doesn't support any medical therapy to retard or limit stenosis. If it gets bad enough you have surgery, and if you are the typical weggie you will have more than one surgery. My WG could be flaring and it not affect my stenosis at all. My stenosis could be outrageous and my numbers be just fine. The WG triggered the stenosis clearly, but after that it just does whatever its going to do. I'm on no steroids whatsoever, and my mtx is just to get me into a non-inflammatory state (which I am) but (no surprises here) my stenosis is slowly coming back (three months post surgery).

That's very interesting and weird! Thanks Jan. I would have thought that the Stenosis would run in parallel with whatever was going on WG wise. How do you feel the Stenosis, is it because it's a bit harder to draw a breath or is it something else?

[JanW]

Harder to draw a breath. Also you can hear your breathing in and out, when it's serious (like mine was). When you breath in, people should hear nothing.

Completely doesn't run in parallel, which is well known among weggies who have been well informed about their stenosis. Unfortunately, it does run in parallel with saddle nose, again for poorly understood reasons. My doc often sees both in stenosis patients and calls it the 'stigmata' of WG, which I'm sure I've mentioned here before.