Rituxan for airway involvment

If uve read any of my previous post,you know i am currently having a flare in my airways. Thru the years ive been sick ive only had airway involvement for the past 4 years. Only had 1 surgery. 2 flares treated with pred which is what im currently on. My wegs has been treated with cytoxen at first...and then imuran for 7 years and then we added methotrexate because my joint pain kept reacurring. So as of 2006 ive taken imuran and methotrexate and only use pred during flares. i just had a very long conversation with my old dr. She saw i was seen in her clinic so just called to check on me. (how sweet) WE talked 45 min. Never in all my sickness has that happened. Anyway i was asking her how she feels about whether or not ive ever really reached full remission...feel like a sputtering volcano. so she brought up rituxan. She said she doesnt know what it does for airway involvement. So ive come to the experts for advice :)

prednisone alone for flares is not enough - it will hide the symptoms but not address the problem. Rituxan should help bring you into remission - but your best bet is to consult with one of the vasculitis experts, and have your doc coordinate care in consultation with them. For tracheal stenosis specifically, Dr Robert Lebovics in NYC has years of experience with surgery for GPA patients and you might try to check with him as well.

Good luck.

My dr told me yesterday that she is friends with dr ville forte at cleveland clinic and is going to consult with her on the issue...that makes me feel much better. I still want to hear anyones experience with it. Thanks!

Hi, It will depend on which kind of stenosis you are experiencing. One is swelling, granulation etc this one will respond well to medication. The other is scar tissue which keeps growing, this has to be removed surgically repetitively. My experience with Rituxan has been positive in getting WG back in it box.

I experienced swallowing problems that have recently been diagnosed as an esophageal web. Any one has knowledge of a connection to WG?

Had to have my windpipe stretched 3 times - since being on rituxin it has taken care of the probelm. Still see my ENT but for 3 years now everything has been fine.

Meredith-was that a problem due to breathing or swallowing?

Breathing - can be scary. Just went to my ENT he said things look pretty good, some scaring still showing. I have a close relationship with him because of all my problems even hugged me on Friday. Very important to keep a watch on it we are trying to take care of it before a breathing problem occurs. I was told the only time predisone would help with Wegs is if it was done by IV, pill form takes days to kick in. Presdisone never helped me with the breathing problem. Epinephrine is the only thing that will open my airways - have to go to the ER to take it.

When I was diagnosed in 09 after months and months of sore joints, aching feet and such, after my first Prednisone pill on a Friday night (80mgs) got up Saturday morning and washed and waxed my truck, pain free for the first time in years, too bad it doesn't last . I think tapering the prednisone to a level we can live with is where most people end up.
Dale

A Good doctor will always consult with another doctor!! A Specialist! But you should be seeing a Rhuematolgist for what you have! And you should be on Retuxan by now!
My kidney doctor did plasmapheresis on me and gave me Cytoxan which I stayed in the hospital for 4 weeks.. My kidney's were at 9% shutting down.. But then I kept getting sick and the Cytoxan wasn't working by the time I left the hospital in February my Rheumy doctor got me approved for Retuxan.. Once on that it took 3 more months for remission. But it is Highly recommended for us.. Cleveland Clinic and Mayo brag about it...look it up...
good luck..

Airway issues are not good and may not be WG related at all. Good luck.

I have had 4 trachea dilations and a flare is what causes my trachea to shrink more. Rtx has helped tremendously and I have not had issues with trachea since. Breathing is still not 100 percent of course because I have no cartilage due to WG but not having a flare since rtx and mtx for maintenance has kept it from getting worse. I wish the best!


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Hello! I am new to this thread... I have my trachea dilated about every 9 month for the past 4 years to help my breathing. Between the dilatations, I get a build up of mucus in my trachea that makes it hard to breathe and I have to cough to clear it. Does anyone else have this problem, and if so, is there anything that I can do to help it?
Thanks :)

Welcome Chelsea B, glad you're here and asking questions...good on you! I haven't had my trach done, but to this day (3 1/2 yrs after initial dx/flare) I still get build up of mucous as my sinuses are pretty wiped out. There are many on here who have had you procedure done, and I'm sure they will respond to you. Best to you.

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Originally Posted by ChelseaB

Hello! I am new to this thread... I have my trachea dilated about every 9 month for the past 4 years to help my breathing. Between the dilatations, I get a build up of mucus in my trachea that makes it hard to breathe and I have to cough to clear it. Does anyone else have this problem, and if so, is there anything that I can do to help it?
Thanks :)

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Anyone have any experience with nebulizing to take care of this? Works for asthma and damage from wegs, but will it work for trachea mucus? Hmmmm?

I have tried a nebulizer but it doesn't work very well.

Quote:

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Originally Posted by ChelseaB

I have tried a nebulizer but it doesn't work very well.

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When I had some bad mucus plugs in my lungs, my Rheumy prescribed acetylcysteine to put in the nebulizer. In addition to being a Tylenol overdose medication, it is a very good mucus buster! Might want to ask about it to your doctor. Maybe it might work for you too?

I have a buildup of mucus that eventually effects my voice causing hoarseness and I have to cough forcefully to expel the mucus. This happens between dilations. The mucus seems to come from just below the vocal chords, and my ENT cannot seem to fix the problem. Ive been on multiple antibiotics, and now an antifungal, and had several treatments with Rituximab a few years back, which seemed to really help. I guess it's time to re-visit the Rituximab again. The mucus always turns to a bloody, thick mess that becomes harder and harder to expel, and my throat starts to hurt and voice goes away. Last ENT visit a week ago, showed ulcerations on the vocal chords, which is a new symptom. I hope you are better soon.

Since being on Rituxan I have not had to have my windpipe stretched (3 to 4 times I had to have it done). I do have mucus/coughing in the mornings - usually I am able to take care of it within an hour of getting up. Talked to my ENT about the coughing- he said it was caused by the scaring from having the surgery. Can't complain - as long as I can breath. I have a new problem now - CLL. Took me off of Rituxan last year so I could start my chemo - I am worried about the complications from not being on Rituxan.