A semi-new Weggie-new to here but not with the condition.

[Carly Hedge]

Hi,
My name is Carly.
I was diagnosed with Wegener's Granulomatosis in Aug. 2009.
Had the textbook symptoms-started with an inner ear infection and spiraled downward in about a month and a half. Started around Father's day of 2009. Admitted to the hospital July 31st 2009 and spent 2 weeks in the hospital. My Dr.'s were great on working so fast to find out what I had. Just sucks that my treatments don't do so well. Started on Cytoxan while in the hospital but wasn't even on that for a month before my liver went into failure. So got pulled off that and was put on the max Pred dosage I could have outside of a hospital and confined to my house. Finally, my Rheuma Dr. went to a conference and found out about Rituxan and we requested permission from the insurance company since its not FDA approved for our condition. That is a hassle. But got approved and took my first round about Thanksgiving 2009 and finished right before X-mas. So I am on my 2nd Round of Rituxan,but on a daily reggime of pred and a couple others drugs. We also tried Methotrexate but that also caused my liver to fail. So my only saving grace right now is Rituxan.

I have also signed up to participate in a 5505: Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangitis. So I am awaiting to hear back from the Dr.'s Nurse for an appt to go to Johns Hopkins. If you would like to know more about the study, I would be more then happy to send you the info. The more that participate, the more they will hopefully find out about us, Weggies!

[elephant]

Welcome Carly, So glad Rituxn is working for you. HOw many rounds are you doing of the Rituxan?

[Carly Hedge]

Thank you, I am too.

My Rheuma has me do 4 sessions every 6 months. So once a week for 4 weeks then we do the same thing 6 months later.

[Sangye]

Hi Carly, nice to meet you. Since you're so close to JHU, you might consider having them oversee your care. I'm glad your rheumy has researched options for you, but all Weggies really need a Wegs specialist on their case. That's the word directly from Dr Seo's mouth....

[Carly Hedge]

Well thank you Sangye. I did tell his medical assistant to have Dr. Seo oversee my case and if he had any suggestions, comments or anything like to consult w/ my Rheuma. I look forward to hearing from them soon. I know that they are in the process of getting my records.

[Sangye]

Excellent. I can take you off my Nag list.

[Carly Hedge]

nag me all you want- I don't mind. LOL. I appreciate ur advice or anyone's here. I advise DR. Seo medical assist so probably after this weekend, I should hear from his nurse to see him.
They got my records, stated that I am a good candidate for the study and also Dr. Seo will be doing an in depth review of my chart over the weekend.

[Jack]

nag me all you want- I don't mind. LOL.

You don't know what you are saying! Sangye's nagging can leave you in tatters. She will not allow that comfortable state of denial to wash over you.

[Carly Hedge]

Thanks! Jack.

[Sangye]

You don't know what you are saying! Sangye's nagging can leave you in tatters. She will not allow that comfortable state of denial to wash over you.

ROTFL-- I would defend myself, but Jack has seen my work. What's worse, I have no sense of remorse for verbally dragging people kicking and screaming to a Wegs specialist. As I see it, my job is to get the body to them and then the doc can administer First Aid.