Wegener's Granulomatosis Support Group

I was diagnosised with WG in 1996, remission 1997, relapse 2000, remission since. Went to specialist a month ago. C-anca normal, WBC slightly low, P-anca extremly elevated. Doctor does not think this is a flare due to lack of other symptoms and other testing negative. Has anyone had an elevated P-anca instead of an elevated C-anca in a flare of WG?

littledutchgirl53

Hi,

Interesting I am also in remission and still have monthly blood work (I have a great Rheumy). My RBC, MCV and RDW are always a bit off due to the meds. But this time my P-anca was also high. Not extremely high but it's been in the negative range since remission.

My doc wrote me a note saying the P-anca may be false positive. It is the C-anca that has been positive when WG was active and is more specific to Wegener's.

She said isn't concern and said all looked well.

Are you still on maintenance drugs? I'm down to 6mg on prednisone and methoxrate. I really look forward to the day of being drug free but looks like it will still be several months.

Blessings,

jer29

Hi littledutchgirl53, I wish I could answer your question, but Would you please answer my? Feb is my 9th month of treatement my Drs. said that in June, I will be out of the drugs-since you have been in remission and you had a relapse ,I need to know what do you feel or what tells you, you are having a relapse? Iam asking you this because Iam planing to move away from my Drs.and I need to be aware what to spect and look for help.Your answer will be much appreciated.Thank you and God keeps you healthy.weggie

Thanks for the info,no I haven't been on any medicine since 2002,I just have yearly checkups.

How long did you have wegner's before you weren't on any more meds?

Can anyone tell me what doctors call remission. Is it when you aren't on any drugs or can you be on drugs but everything is holding its own?

With me the doctor called it remission when all the nodules where gone from my lungs and the C-anca blood work came back to normal. We had caught it early so I was only on Cytoxan for four months with of course the medical/devil drug prednisone at a high dose. I'm currently on Methoxrate (spelling, ouch) and down to 5mg of prednisone.

Even though I am in remission I still have symptoms of WG that are frustrating. The fatigue and pressure on chest, nasal and ears. I still have conductive hearing lose and the ear tubes remain in place, my ENT calls them a crutch at this point and doesn't recommend on taking them out. Oh yea saw the eye doc yesterday and I have a cataract in one eye due to the prednisone. That can wait it's small and not effecting my vision.

If all of these symptoms remain I can put up with it as long as the inflammation of the blood vessels are under control.

I hope that answers your question about remission. I won't be drug free for several more months but we are still considering this remission!

Curious for others comments on this...

Blessings,

Meg

Hi, I was diagnosed 5/09 with WG and I know very little about this disease except it caused me so much shortness of breath, had sub-glottic stenosis, had to have a treach tube put in 3/09 which I still have. I am on Methotrexate and 15mg prednisone, I have one nodule on my right lung, constantly on antibiotics, what I would like to know is how do you get rid of the inflammation.My Dr. has only treated one person besides me for WG so I am lost as to info. If anyone out there could be of help please let me know? Thanks

Not sure if this is the right place but would like to take this opportunity to wish everyone healing and peace this Easter time.

i would also like to wish everyone a blessed easter.

kimberly