Had to stop Cytoxan again due to drop in White blood Cell count.

[drz]

My WBC was down to 3.0 this AM so Cytoxan was held for today and dosage was cut from 100 to 75 MG on alternating days and 100 on other days.

At least my HGB is still in double digits and I have gone over a month since last blood transfusion. I had been getting them weekly for several weeks.

How many other have to stop Cytoxan due to such drops in WBC?

[Sangye]

It may be that the ctx is overly toxic to you so that you cannot reach a therapeutic level without wiping out your WBCs. That's what it does to me. I've been on it twice and both times it happened. (Though during my initial course my lousy local doc kept me on it anyway-- sheesh)

According to Dr Seo I can never take it again. This is why we did rtx.

[drz]

It may be that the ctx is overly toxic to you so that you cannot reach a therapeutic level without wiping out your WBCs. That's what it does to me. I've been on it twice and both times it happened. (Though during my initial course my lousy local doc kept me on it anyway-- sheesh)

According to Dr Seo I can never take it again. This is why we did rtx.

This concerns me cause I tried Rituxan first so don't have a lot of alternatives if I can't take Cytoxan at a therapeutic level. I would like to try get a remission from Wegener's while also avoiding infections or high risk of such. They decided to continue Cytoxan at lower dosage and retest WBC in three days.

Being new at this treatment regime I am still earning about side effects and various risks of all the new meds i am taking to try manage the Wegener's Granulmatosis.
I find the info here helpful and informative in this process.

[Sangye]

I forget-- do you see a Wegs specialist? They're definitely the only ones who can figure out something like this.

[kmcgee21]

My hubby had to stop bc WBC got down to .6. Not going back on it. Waiting on Rituxan as I type. Kelley

[drz]

My hubby had to stop bc WBC got down to .6. Not going back on it. Waiting on Rituxan as I type. Kelley

Did his WBC recover then when he stopped Cytoxan?

What did he use then to manage WG?

Sangye, My Cytoxan dosage is monitored by my rheumatologist who has experience with WG. He has several team members under him who also specialize in vasculitis. I work with them when i go for inpatient care like last weekend for treatment for a flareup.

He also appears quite responsive. My lab work results were faxed to him this morning and within two hours he had new orders and dosage faxed back to my nurses at my nursing home. He spends about an hour with me on my regular visits and is good at answering questions and discussing my treatment plan to try educate me on what symptoms I need to know about and watch out for.

[Sangye]

Okay, good. I'll probably ask you again a zillion times. We've had so many new members in the past 3 or 4 months that I'm losing track. I've gotta keep a better Nag Journal, I guess.

That's roughly the WBC level that got Dr Seo's attention, too. Over the course of 6 weeks, it was trending downward too quickly. He stopped it before it went into a tailspin.

[Doug]

My rheumatologist worked hard at keeping my wbc counts/ rbc counts in the normal range both by varying my Cytoxan dosage, then putting me on - drawing a blank, used to stimulate red blood cell production in the marrow. At worst, I ended up once having a blood transfusion, which ended up being a pleasant afternoon in the hospital, doing nothing. I didn't even have to change into a hospital gown. It seems my red blood cell count was the most worrisome during my time on Cytoxan.

[drz]

My rheumatologist worked hard at keeping my wbc counts/ rbc counts in the normal range both by varying my Cytoxan dosage, then putting me on - drawing a blank, used to stimulate red blood cell production in the marrow. At worst, I ended up once having a blood transfusion, which ended up being a pleasant afternoon in the hospital, doing nothing. I didn't even have to change into a hospital gown. It seems my red blood cell count was the most worrisome during my time on Cytoxan.

Were you able to stay on cytoxan long enough to gain remission of Wegener's?

[Doug]

drz - Yes, I was. Once I reached remission, I was on Cellcept for awhile (at least a year), then just Bactrim as a remission-maintenance drug. That's my only WG-related drug now, though I take Furosimide (40mg, once a day), Vytorin (10/40mg, once a day), and Gabapentin (600mg four times a day) for other issues (fluid build-up, as I did sustain some kidney damage from WG/ cholesterol because I eat the wrong things- if I'm honest with myself!/postherpetic neuralgia on my face, right side, because of an icky encounter with shingles in October-November 2007).