Diagnosed when I was 15

[weswulf]

Hello I’m new and thought I would share my story. My name is Weston I live in Utah, I was diagnosed back in 2009 when I was 15. I’ve had flare ups in my kidney, throat and nose. I developed the typical subglottic stenosis in 2011 and have had around 14 dilation with steroid injection surgeries, usually two a year. I’ve mainly taken prednisone and cellcept, However I just recently got insurance that will cover rituximab infusions so I can finally taper off predniosne which I have always hated taking, especially being so young haha.

[NatriceRomeo]

Hello I’m new and thought I would share my story. My name is Weston I live in Utah, I was diagnosed back in 2009 when I was 15. I’ve had flare ups in my kidney, throat and nose. I developed the typical subglottic stenosis in 2011 and have had around 14 dilation with steroid injection surgeries, usually two a year. I’ve mainly taken prednisone and cellcept, However I just recently got insurance that will cover rituximab infusions so I can finally taper off predniosne which I have always hated taking, especially being so young haha.

Hello Weston & welcome! You were diagnosed so young! I was when I was 17-18 years old. Congrats on getting insurance that covers rituxin. I am on rituxin but still take prednisone. My body loves it & I find it very difficult to taper off. I hope the rituxin works wonders for you!

[mishb]

Hi Wes and welcome

I'm so glad that they figured it out for you in 2009, but sorry that things were so bad at 15 years of age.

I look forward to following your journey as a young adult with WG, and share in your joys as you finally get rid of the tablets and gain full 'medication free' remission.

[whatthewhat]

Hi - welcome - pediatric-onset Wegener's is not so rare as the commonly-held statistics show. I know 3 current pediatric cases in Utah (one of which gets regular dilutions too; small world!) I am sure you have read or been told that pediatric-onset WG can flare more readily, so good for you to keep on it. Rtx should help. The Rituxan company offers grants to offset the cost (even if you have insurance) so be sure to look into that. (Younger than 18 it's through the Healthwell Foundation, adults it's through the company Genentech. You may also want to tell your rheumy other docs about the grant program, as someone should have helped you find it before now imho.)

[Alysia]

Welcome to the family, Wes. I am sorry that you got it so young, and still fighting. Rtx is a wonderful medicine, which helps many of us to get into remission.
When you will be ready to taper the pred, please do it very slowly and gradually. You can check here on post number #9 a suggestion how to make it safely, of course after consulting with your dr.: https://www.wegeners-granulomatosis.com/forum/threads/5674-Pred-Uglies

[BenHornsby]

Hello I’m new and thought I would share my story. My name is Weston I live in Utah, I was diagnosed back in 2009 when I was 15. I’ve had flare ups in my kidney, throat and nose. I developed the typical subglottic stenosis in 2011 and have had around 14 dilation with steroid injection surgeries, usually two a year. I’ve mainly taken prednisone and cellcept, However I just recently got insurance that will cover rituximab infusions so I can finally taper off predniosne which I have always hated taking, especially being so young haha.Hi Weston,

Thanks for sharing your story and welcome to this elite club.

So glad they are getting faster at recognising our condition and congrats on the insurance, i am on rituximab and love not having to take daily meds..

Ben :-)



Sent from my SM-G930F using Tapatalk