my story

[Poodle]

Hi Fellow Weggies

I was initially diagnosed with Wegners in 2001, as my Wegners is located mainly in my sinuses and lungs, I initially suffered with blocked sinuses and ear infections, I woke one morning to be confronted with a very lopsided left hand side of face only to find I had facial palsey, I had gone completely deaf in my left ear. I went on a treatment regime of Cyclophosphamide and Prednisolone, needless to say this was not a pleasant experience, my facial musles started working again after about 4 months, i now have full hearing in my left ear (although my husband would disagree with that) Selective maybe!.

My treatment lasted for about 3 years before I went into remission, I was told on Wednesday (04/12/2013)(although I had already guessed) the dreaded **** is back again this will be my 4th round. Last year I had a course of treatment Rituximab which was a lot less invasive than previous rounds of treatments.

That is my shortened version of my fight.

[mishb]

Hi Poodle and welcome to the forum.

I sure hate seeing you guys/gals - the ones that have been diagnosed more than ten years ago - returning or having to find the forum, because the dreaded Wegs Dog has been woken up. I'm sorry this has happened to you after such a long time.

I hope things go quiet again for you quickly and you can start to enjoy a comfortable remission again.

Take care and ..........

[Dirty Don]

Welcome Poodle, we look forward to hearing of your experiences since you are more experienced than many of us on here. Please share stories/info, and ask any and all questions you may have. Best of luck on the treatments!

[tmkd]

Hello Poodle! Sorry to hear that you have Wegeners but I'm glad your sharing. I, myself have had both the cyc+preg and Rituximab treatments and would completely agree that the Rituximab was a lot 'easier'. Quick question about your ritux treatment. Did you receive a maintenance treatment X number of months after your initial treatment with it? I, myself, have been recently diagnosed with Wegeners and treated with both cyc+preg and Rituximab and was just wondering what's ahead.

Thanks

[Alysia]

Hi Poodle and welcome,
you are a "veteran" of wg, so I believe that you can handle it now, with the rtx which is a miracle, as far as I can say....
where do you live ?
Thomas, I am getting rtx every 6 months for maintenance, 500mg IV X 2.

[annekat]

Welcome, Poodle. Our cases are similar in that I also have sinus, ear, and lung involvement and was treated with CTX and prednisone, which together cleared up my lungs very well and the other stuff has improved a lot, too, except for some permanent hearing loss. I'm now on MTX for maintenance ad trying to taper the pred at the low end. We are different in that I was only dx'ed coming up on 3 years ago and probably had it for at least 2.5 years before that. So I haven't suffered the disappointment you are dealing with, being in remission for some years and then having it come back. I hope your RTX treatments will give you a lasting remission. Please keep us posted on your progress.

[Jaha]

Hi Poodle,

Glad you are here with us, not glad that you came out of remission, I sorry that it struck you again after so long of time.
I wish you all the best