Debbie

**debbie** · 06-11-2008, 12:54 PM

My name is Debbie, I am 46 years old living in Alberta, Canada. I have recently been diagnosed with WG. Like most it all started with cold like symptoms. It was the Tracheal Stenosis that got me hospitalized and finally diagnosed. I have been on cyclophosmideboth daily pill form and then switch to IV treatments every 3 weeks, I am also on 40mg/daily of prednizone. I am just waiting for test results to come back to see if I have to continue with he cyclo treatments.

Wondering for those of you that were on the cyclo either pill or IV, how long were your treatments and what was the dosage.

**andrew** · 06-11-2008, 07:24 PM

Welcome Debbie!!!

When I was diagnosed, I was on daily cyclo pills plus IV daily while I was in Intensive Care.

After that, it was daily cyclo pills and monthly IV cyclo/metotrexate. This went for approximately 12 months. At that point I was switched to Imuran which I remain on and have had for almost four years.

Everyone is different though so my experience (or anyone else's for that matter) may not mirror yours. It all depends on bloodwork and your response to treatment.

Remember (if you haven't been told), drink lots of water when you're on the Cyclo pills. You need to ensure your system is flushed as the residue from the pills can stay in your bladder and cause problems. Problems are uncommon but best to be safe :-)

What has your reaction been to the cyclo? I lost some hair on my head and on my calves for some reason. Weird huh.

**witho** · 06-15-2008, 04:38 AM

Hi Debbie

I was on cyclo in tablet form, 150mg per day, for 3 months after diagnosis. Then since then, I've been on 150mg Imuran.

My hair thinned out to the extent that I had it all taken off in the end. Other than that, I didn't really have any other side effects (apart from the ones from the pred)

**capabayan** · 06-17-2008, 06:47 AM

I've been on cyclo, tablet form, for most of the last 13 months. When I got out of the hospital in May 2007, I started at 100mg per day, then advanced a few months later to 150mg. I was on Imuran for about 3 months from December-March, but have since been back on cyclo, 200mg per day.

The 2 big side effects I have noticed from the cyclo is thinning hair - mine is long, so I can hide it a little, except near my part line - and after being on it for several months it starts making me tired.

Pred was a different story, as far as side effects go...

**witho** · 06-17-2008, 07:28 AM

Oh yeah - the other big side effect from cyclo is that my period stopped for 6 months. Actually thought I was in the menopause for a bit, because I was getting hot flushes. But my period came back and no more flushes, so not sure what that means.

**debbie** · 06-18-2008, 12:52 PM

I go back to the Doc next week to find out if I will continue with the chemo. I didn't have any real bad side effect, my hair stayed in tack. I to haven't had a period for 7 months now, with never ending hot flashes (I'm hoping that dosn't come back).

And like you said Pred is a whole different story...

**JustJoe** · 06-20-2008, 05:42 AM

Hi Debbie,

While I don't have WG I do have Microscopic Polyangiitis. I was diagnosed with MPA around December 2005. I was on 650 of IV cytoxan for 18 months and 120mg of prednisone EOD for quite a long time. I know this is going to sound really odd but while I was on the Cytoxan, I did not lose any hair on my head but went bald from the neck down! Once I came off the cytoxan it moved onto 2000mg of Cellcept. Right now I think things have finally stablized. I did not have any significant lung involvement but my kidneys took a real beating.

Joe