Mike: 27 years without WG

[andrew]

Now I tell people Wegs is teaching me how to float instead of fight.

Awesomeness! I'm going to use that one myself!

[mikecaven]

The first time was mainly sinus and lungs with a little bit of kidney involvement. This time the kidneys got hit harder...and my fingers got some vasculitis ulceration...very sore at the tips of two fingers. My creatinine level was 2.25 and is now near 1.6 after being on 200 mgs of Cytoxan and 60 mgs of Prednisone. I am now off of Pred and am on 150 mgs of Cytoxan until June. But the rheumatologis tells me that there is no sign of WG at this time...just a little loss of kidney function. Thus, the creatinine staying high.

[mikecaven]

No I am still on Cytoxan until June but off predisone. The Dr. tells me I have no active symptoms...and I feel pretty normal.

[pberggren1]

Well, I think a remission is different for everyone. For me it is the sinus problems, shortness of breath, high heart rate and bp, deviated septum, dry throat and larynx, poor energy level, blocked tear duct in left eye (should have surgery in May to correct), total hearing loss in left ear and 75% loss in right ear, etc. I always know that someone else has it worse than I.

[Doug]

Hi Doug,
I would edit your e-mail address or the crawlers will find it and send you lots of spam!
Just put "at" instead of @

Thanks! It took me a bit of time to figure out where I put my e-mail address. I decided to remove it altogether. The sentence containing it, I mean. It is silly to spend money for spam-blocking programs, then invite more of it, eh?!

[andrew]

Thanks! It took me a bit of time to figure out where I put my e-mail address. I decided to remove it altogether. The sentence containing it, I mean. It is silly to spend money for spam-blocking programs, then invite more of it, eh?!

Ooops...sorry Doug, I normally pick that stuff up and advise removal when it's first posted.

[Doug]

Andrew

"Let there be peace on earth, and let it begin with me."

[Rylee]

As being a 'newbie' to WG - I am pleased to hear of such long remission periods. What I can't seem to find an answer on from my Drs - what is remission considered - and will I have to stay on meds or will I be drug free? I consider myself luck to have been diagnosed early and it looks like Predisone and chemo are doing the trick in getting me back on track. However, I am 35 with 3 kids, working full time, and a husband in the military and I really like to plan everything out - something I am finding hard to do right now.

Any advice or crystal balls out there....... is long remission periods common? should I expect to be fighting this 'drug fight' again or many times (I hate what Predisone is doing to me).

Sorry - little frustrated at times - but grateful for what I don't have right now....

[Jack]

Hi Rylee,
I'm sorry, but there are no easy answers to your questions about the future. I expect you have read other posts on this forum and know by now that we are all very different in our symptoms and the level of treatment required. It is the nature of Wegener's to have several very common effects, but no set pattern.
There is no definition of remission other than the way you feel and then it could last forever, or maybe you never reach that stage at all. There are members here who were diagnosed in the early stages, have little damage and get by with hardly any medication. Others are far less lucky.
In my own case, I suffered a lot of permanent damage in the early days and it took several years to reach anything like remission. I then held down a good job for many years and brought up two daughters before the long term accumulation of problems caught up with me and I had to retire.
Keep posting and reading the forum together with any other information you can find and you'll very soon become an expert!

[JohnL]

I was in remission about 3 years ago and stopped cytox and pred - lasted over a year then had a flair - ANCA test of 67 - about 6 months ago went into remiss again bust stayed on cellcepy and 10 mg pred. Feeling pretty good for 81 years/ Get arnanase 'spelling??/ once a month.