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Thread: Cytoxan

  1. #1
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    Default Cytoxan

    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?

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    Ginger tablets. Can't recommend them highly enough. I take a couple when I have nausea and within 20mins it's smooth sailing.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    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...

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    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!

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    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.

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    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.

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    Sangye,

    I know you flared and that is why you had to go back on Cyto...but my question is what happened to Cellcept,,,I know you had been on it for 2 yrs, did it stop working for you?

    Secondly, why 150mg is that too little, I started on oral Cyto at 150mg when first diagnosed and my height and weight was 6'4 and 255, and yes I gained 10lbs because of pred. Darn

    Thirdly, I started Cellcept 2 months ago so far so good, but do you think long term that our BFF comes back or is this an anomaly due to Wegs being so systemic?

    Anyway hoping for your revival and your Cyto being replaced again with Cellcept.

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    Richard,
    My Wegs doc said Cellcept was working great for me. It needed to be increased in Feb/Mar but it wasn't obvious until now. I was on 2,000 mg/day of CC for over 2 yrs, and we had just increased it to 3,000 mg about 7 weeks before my lungs started bleeding. He says if we had increased it sooner, it would have been enough to keep the Wegs in check right now--ie, we'd never need to do ctx. He hadn't wanted to increase it sooner--it really wasn't clear at all that it was Wegs. The other day he told me (about my Wegs case), "Nothing about you is black and white. Everything is gray." Stinkin' gray....

    Why only 150 mg? He's extremely conservative about using ctx and higher doses of pred. A lot of his research is about the overuse of those drugs, and how patients get into more trouble (or die) from the drugs than from the disease. He also thinks we're catching the Wegs before it's a full-blown major flare, so we're able to use the lower end of the dose.

    Anomaly vs Inevitability : I think it's all individual with Wegs. I think Cellcept is great and is fully able to keep Wegs contained. He thinks so, too, and the plan is to do 3-6 months of ctx and then switch me back to the 3,000 mg CC. It's also entirely possible to get the Wegs under control to the point that no drugs are needed. It happens.

    It's funny how everything changes. I never thought I'd be counting the days til I could go back on CC. When I first had to go on it, I had a MAJOR hissy fit. Major.

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    Yes...when I first went on meds the most I had ever taken before was aspirin or allergy medicine...so i hear ya about taking chemicals that your body was not meant for...but can help us through this WG grind.

    Anyway...looking 4ward to getting you back on CC.

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    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.

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