New Member/Thanks to all of you

[Aunnie]

Hi Everyone.
I've been reading your chats for about a month now and have really connected.

A bit of history:

Initial symptoms,sore throat (it lasted for 1 year Dec. 06-Dec 07),leg pains,nosebleeds,extreme fatigue and skin lesions.

I was finally diagnosed July 9th 2007.From Internist to Infectious Disease Dr,to ENT,to Rheumy, to WG Specialist in Boston.

I started with Pred & Methotrexate got Neuropathy in Fingers,Then on to CTX orally.I was sick everyday on CTX,so they tried Ctx IV, had 8 treatments and ended up in the hospital totally dehydrated.

Then onto Imuran & pred.
Then Cellcept and Pred.
Now Cellcept,Pred.and Orencia infusions.

I have never been in remission,but there is always hope.
My current symptoms are nasal crusting,nose bleeds,ear lesions and pain,muscle pain,sore throat again and of course FATIGUE.

I've been doing some gardening,but always know my limits.I'd love to be working and golfing again.......


You are a very encouraging group and thanks for being here for all of us.

Fondly,Aunnie

[pberggren1]

I've never heard of Orencia before. What is it?

Aunnie, do you go to Boston University to see your Wegs specialist? Dr. Merkel is there.

[Aunnie]

Hi PB,
Orencia is approved for RA,but my docs at Boston Univ,Med center,Dr MERKEL and Dr Monach are using it in a study and I'm in it.Somedays I think its working because I have lots of energy and its very surprising to have a good day and sometimes 2 in a row.We are trying Orencia for 6 months and go from there.I still have nose ,joint and ear symptoms.
Thanks for your comments!!!

[pberggren1]

You are very brave to try a new drug Aunnie. We all owe you a lot fo gratitude.

[elephant]

Hi Aunnie, lets us know how the new drug works for you when your finished. Boy the doctors have tried many medicines to get you in remission. Hope this combo works for you.

[Sangye]

They're testing abatacept for "mild, relapsing" Wegs at all the Vasculitis centers and this study should conclude by the end of this year. My Wegs doc (Dr Seo) is the one doing the research on it at JHU. People can still participate in the study, so if you're interested please contact one of the centers listed.

Here is some info about the study. Much of it overlaps, but it's interesting to see what's going on.
http://rarediseasesnetwork.epi.usf.e...s/Wegeners.pdf

Abatacept in Treating Adults With Mild Relapsing Wegener's Granulomatosis - Full Text View - ClinicalTrials.gov

VCRC Multi-Center, Open-Label Pilot Study of Abatacept (CTLA4-Ig) in the Treatment of Mild Relapsing Wegener?s Granulomatosis | Vasculitis Foundation

Aunnie, I thank you for participating in this trial. So many people can benefit from your courage.

[Aunnie]

Thank You all for complementing me on my courage..

But as we all know, we need to find something that works for us.

The infusion is very easy,no side effects at all.
Half an hour for the infusion and then wait a half an hour to see if I'm ok.No problems at all. Much easier for me than Cytoxan.

Aunnie

[Sangye]

That's great. I hope it plops you right into a solid remission.