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In April of this year I was feeling well enough to go on a road trip to the southern states. We loaded up our 5th wheel and dog and headed south just before another large snow storm hit here in...

Thanks everyone, after several conversations with my Dr. It's been decided that I've never had remission and the taper of medications was faster than it should have been. So it's back on full...

Hi all,

I've been on pred and cytoxin since Dec. 2014 when I was diagnosed. I was doing pretty well and beginning to feel human again not long after being released from the hospital after mega...

Thanks everyone, I guess I was having one of those days. Just one more yucky thing to deal with along with moon face, fatique all that comes with pred and cyto. still learning to deal with the roller...

Has anyone else lost hair while on cyclophosphamide? I've been on it since the beginning of December 2014, 125mg daily and I'm finding that my hair is starting to come out slowly. I was told that...

Thanks everyone. I am still learning about the roller coaster of all this. I am definitely going to have to learn to take it a day at a time. I'm so very glad that I now have a place to go and talk...

Hi all,

After I was diagnosed 3 weeks ago in Colorado my husband found your website. He posted my story (Just diagnosed in Colorado - LovinLife) and you were all very encouraging and helpful as...

Thanks, it's encouraging that we can hopefully still travel. We both love to travel and had all kinds of plans to go places during our upcoming retirement years. Sounds like that is still doable but...

As a newbie to WG (wife diagnosed 2 weeks ago w/mainly just lung involvement), we are interested in people's thoughts/recommendations for traveling with WG.
- Plane travel (or any public...

Good to know about the hydration. Even though the docs and nurses told her to drink lots of water, hearing it come from someone with WG somehow makes the advice seem more important to heed. You all...

Thank you all for the warm welcome and positive feedback. Each day seems like she is getting a little more energy but I'm sure this will be a long haul. Sounds like there will be good days and some...

Hi all,
My wife was diagnosed this last week with WG so we are on the search to figure what all this means and how this will affect our lives. She had symptoms starting 2 months ago of extreme...