WG in remission

[Gwenllian]

Hello!

I've been struggling with Tracheal Stenosis for over 7 years, but now that i've had Ritixumab it's almost all gone! It's amazing. I hope it'll never get that bad again.

Is anyone else much better stenosis wise, after treatment?

Gwenxxx

[jspelk325]

I've had sub-glottal stenosis for 10 years. for 6 of those it was so bad that i needed a tracheotomy, and towards the end lost my voice. My wegeners went into remission with remicade and methotrexate, but the damage was already done to my throat and especially my voicebox. Luckily, some brilliant docs at the Cleveland Clinic were able to reconstruct my voicebox just last december. Giving me a permanent voice and making me trach-free. I'm litterally in the best health i've ever been in since being diagnosed with WG over 10 years ago. If you ever have serious throat problems that cant be solved by meds alone, DEFINETLY go to cleveland.

jspelk

[andrew]

Originally Posted by Gwenllian

I've been struggling with Tracheal Stenosis for over 7 years, but now that i've had Ritixumab it's almost all gone! It's amazing. I hope it'll never get that bad again.

Great news Gwenllian! Glad to hear it, well done!

Originally Posted by jspelk325

Luckily, some brilliant docs at the Cleveland Clinic were able to reconstruct my voicebox just last december. Giving me a permanent voice and making me trach-free. I'm litterally in the best health i've ever been in since being diagnosed with WG over 10 years ago.

Congrats! That must be an amazing feeling to be rid of that - almost like being made new I've heard good things about Cleveland Clinic from many people.

[dalzielette]

jspelk: You didn't happen to meet up with a Dr. Langford at Cleveland Clinic did you? I had her as a child at NIH and then she moved to Cleveland... just curious. She was wonderful.

[jspelk325]

no, but i know who you're talking about. I think i was actually supposed to see her, but i ended up seeing Dr. Hoffman, who's their top WG guy. Super nice guy too. But i also have heard amazing things about Dr. Langford. CC evidently has all the best WG docs. too bad i live in LA. But it was worth the trip. i spent most of my time with the ENT's.

[Gwenllian]

Once youve found a good doctor, you just don't want to let them go!

[andrew]

Originally Posted by Gwenllian

Once youve found a good doctor, you just don't want to let them go!

Too right! I've been so lucky with doctors. I have a brilliant GP and Immunologist. There's no way I'm moving from this town unless they do IT takes so much of the stress away when you know that you can trust your doc.

[Marcy]

just saw this thread and wanted to say that Dr. Langford is my doctor at the clinic that cares for me and my WG. she is amazing!!!!!!!!!!!
Marcy

[Marcy]

who was your ENT at CC? I used to see Dr. Lorenz, he is a true expert in his field but unfortunately he is now out of the US working in Abu Dabi United Emeretts (sp?). I can't remember the name of the doc taking over his patients, I hope the replacement is good.