Cytoxan

**Sangye** · 07-15-2009, 07:24 AM

I just started back on oral cytoxan last weekend. What a little pleasure ride, huh? The last time I was on it, I was also on serious pred, so I know it masked a lot of the ctx symptoms for the first several months. When the pred was lowered, the ctx side effects became more evident.

I've had a lot of nausea since starting this time. It usually takes about 7 hrs to show up, though. Today was the first time I woke up with it and it hasn't decreased all day. Peppermint tea did nothing this morning.

I talked to my doc and he said to decrease the ctx dosage for the next few days--that maybe I need to start it more slowly. I'm trying not to decrease the dose, since we're barely keeping the Wegs at bay right now.

What kinds of things have you guys tried for it?

**andrew** · 07-15-2009, 07:30 AM

Ginger tablets. Can't recommend them highly enough. I take a couple when I have nausea and within 20mins it's smooth sailing.

**Luce** · 07-15-2009, 07:41 AM

I'm not sure which I loathe more to be honest, pred or cyclo,

The nausea for me was always about half an hour after taking it in the morning and lasted until about lunch time.
I never really tried anything for it, just put up with the churning until it very gradually subsided each day.

What dose are you on? I started at 200mg which made me very anaemic, then we dropped to 150mg which was fine for a while but then it started causing havoc with my bladder. I finally felt ok at 100mg, but at that point things were starting to improve so we could risk the lower dose.

I hope you find something to ease the ickyness...

**Sangye** · 07-15-2009, 07:57 AM

I'm on 150 mg. Based on weight (we're talking cattle scales here) I should be on 200 mg. My doc said it's a close call. I'm sure they must want to chuckle sometimes, at just how big we Weggies can get. Sometimes I feel like Big Momma in that movie!

**Luce** · 07-15-2009, 08:04 AM

The renal dietician at my clinic insists on commenting on my weight and trying to help me lose it. I have almost lost patience with her when trying to explain the side effects of pred - unless I am to starve and spend 8 hours a day on a treadmill I don't think this woman will be happy with me.
Her solution? Either medication (Alli/Orlistat) or gastric band surgery! She just doesn't get that I can't really risk either of these options when progress with the wegs is going so well.
She is very frustrating and is obviously not happy with my 3 gym sessions a week and step aerobics. I would be happier to take her advice if she were not as tall as she is rotund - it just feels hypocritical.

Sorry rant over, this was the only disappointment in my day today.

**Sangye** · 07-15-2009, 08:14 AM

You'll probably never satisfy her or get her to understand what it's like. Personally I don't think anyone can fully understand what pred is like if they haven't taken it. They also think if you're on lower doses or off it, that your body goes back to normal. I've been off it for 2.5 years, and my body shape is still completely different than it ever was before. It isn't just the weight--I'm actually shaped differently, as if I'm still on it.

With people like that I tend to expend lots of energy explaining over and over, trying to get them to see it. All it does is exhaust myself. So now I remind myself to just look at them, smile, and say something like, "Yeah, that's good to know." I just give them the same blank stare they give me. Stops them in their tracks every time, and I don't get all stirred up over it.

**germaine** · 07-17-2009, 01:00 AM

So glad to have you back and sounding fiesty. Bummer about your set back. I am frightened about giving advice to someone who knows a whole lot more than I do about all this stuff, but I wonder if you ever tried the zone diet. I have ALWAYS struggled with my weight, and you know how helpful the pred is. Anyway I managed through my two cycles of 60 mg to only gain 5 lbs, and have actually finally got that off since I am now down to 12.5 mg.

I am on procytox 150mg a day. I take it with food and water. I get kind of queasy if I don't eat enough with it, but usually no effect at all. I think this is just a brand name for cyclophoshamide, so it might be the same thing. These seem to be nicely coated pills that slide down well. Maybe you are saying "yes, yes, I know all that", but I thought there might be a useful crumb here somewhere.

**Sangye** · 07-17-2009, 01:51 AM

Hi Germaine,
LOL--Please don't think I couldn't benefit from some advice! It's very easy for me to miss obvious things, especially when it concerns my own body.

Yesterday my doc said to reduce the cyclo to 100 mg. After continuing pain, today he said to lower it to 50 mg. When I took ctx in '06, I increased it slowly. Hopefully this will be fast enough to get the Wegs under control. I've never seen a coated ctx....

The Zone diet is very good for certain constitutions. It has certainly worked great for you! With my constitution, I'll lose weight for a couple weeks, then will actually start gaining. Within a month, I'll get sinus headaches, constipation, irritability. In Ayurvedic medicine, this is a typical response for a Kapha constitution. Many years ago Oprah--who is also Kapha-- tried such a diet. I wrote her and suggested she ask her friend Deepak Chopra for his Ayurvedic opinion. She stuck it out, and within a month was miserable with the same symptoms.

The way we react to pred also has a lot to do with our constitution type. Pred is considered "cold" in Eastern medicine. Kapha is already cold, and adding more cold causes a lot of weight gain. Pitta constitutions are most benefitted by a zone diet. Pitta is hot, so pred typically causes the least weight gain for them.

For me, physical activity is very important when it comes to losing weight. Not being able to exercise at all for 3.5 yrs has been disastrous for me. My doc thinks the ctx will get the Wegs under better control than it's been for months, and in the end may actually strengthen me. I sure hope so!

**janNaz** · 07-21-2010, 04:09 PM

Hi all.

I've been on cytoxan and pred since March 11, 2010 (a little over 4 mos). I met with Rheumy today and asked about alternative to ctx. She informed that dosages of my meds (currently 175mg ctx and 25mg pred) will remain the same for now until reevaluated in 3 weeks, and that the plan is to continue with cxt (tapering along the way) for a year. Now my major concern: I thought that I read somewhere on this forum that ctx should not be taken more than 6 mos because of long term side effects. Maybe I misinterpreted? Does anyone have any info to share on this? Thanks much!