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susieq40

Cellcept

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Hey all, is anyone on cellcept, what are your results and side effects? Just a wondering, gonna hopefully start that instead of cytoxan. Warm gentle hugs to all!

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Hi Susie,

 

I'm on CellCept and have been for 3 years now. It's worked well for me and the only side effects that I've experienced are lowered white blood cell count and some sun sensitivity. It's supposed to be taken on an empty stomach, 2-3 hours after a meal or an hour before eating (to make sure it is absorbed properly) and that makes for some interesting scheduling of meals, but has the side effect of making one cut down on snacks. :D

 

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Susie,

 

I was started on Cellcept when I started to get progression of skin thickening/tightening. It had a really good effect - my skin improved enormously during the time I was on it. I had to discontinue due to an oesophageal haematoma (which I hasten to add, is an extremely rare side effect). Up until that point I really had little in the way of side effects. I was really disappointed to have to discontinue. I would much prefer to be taking Cellcept than the Methotrexate that I am on now. I hope it works well for you.

 

Lizzie

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Susie,

I went on cellcept in spring of 2007 after a bad reaction to cytoxan. Things have remained stable if not some improvement (as much as sclero allows anyway). I have had no side effects that I know of. I'm at full dose and seem to handle it quite well. Hope it's good to you.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi there

 

I started on Cellcept just over a month ago but had to stop after a couple of weeks because my white blood count went too low.

I was off for two weeks and have just started again but just at the lowest dose and hope to increase weekly.

 

The first time around I felt very nauseous but not since restarting.

 

I am very interested about what Jeannie said (taking on an empty stomach) because no one mentioned that to me and it's not on the hospital handout. In fact I keep some plain boiled rice in the fridge which I just mix with a little soya milk and live yogourt and sweetener (very yummy actually) and I have a little dish of that before I take my tablets because I thought it would be better for the tummy. I am taking Nifediprene, Fluoxetone and Cellcept and Lanzoprazole first thing but that is on an empty stomach.

 

Maybe the reccomendations have changed about administration methods. What have others been told?

 

Good luck anyway.

 

Vanessa

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Susie...I have been on Cellcept for 7 years. I just take it whenever, no scheldule. It got me thru the rough times, first three years. After that it put me in remission. We know that

because my doctor at JHU has taken me off of it three times and Ssc. comes back within 6 wks.

Because I was put on it so early I think it kept me from have early I organ involvement. We have agreed I will be on it for life....alice PS: Good Luck

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I just looked it up to be sure, but it does seem to be preferable to take it on an empty stomach:

 

 

CellCept Capsules, Tablets, and Oral Suspension

The initial oral dose of CellCept should be given as soon as possible following renal, cardiac or hepatic transplantation. Food had no effect on MPA AUC, but has been shown to decrease MPA Cmax by 40%. Therefore, it is recommended that CellCept be administered on an empty stomach. However, in stable renal transplant patients, CellCept may be administered with food if necessary.

 

 

I have to admit, if I'm having a sore stomach, I do take a little yogurt with it. :blush: My rheumatologist told me to take it on an empty stomach when I started it and I said "sure, no problem", but that was when my GERD was so severe that I wasn't eating much anyhow. Now it is a problem! Oh dear~ Scheduling meds is sooo much fun.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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:thank-you:

Thanks everyone! I'm hopefull that I won't have much of the side effects, I usually have trouble with most medications. But hopefully...like with the cytoxan, will be beneficial...Thanks again! :D

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Just putting my 2 cents in here, but for me, Cellcept made me have massive bathroom issues and severe stomach pains. I was taken off and put on Immuran. I still have some issues, but no more pain, though I do seem to have taken stock in Immodium!! Cellcept, I am told usually helps stop lung issues. I have very bad lungs, and so far the Immuran seems to help about as much as Cellcept. Of course everyone is different. I have been seeing a Rhuematologist formerly associated with Duke university and he is having me take another breathing test before I he looks at Cytoxan I V for me. I hate I V's!!! :temper-tantrum:

 

Angel Sky

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Angel Sky,

 

Hey, thanks for the input on the cellcept. I'm pretty sensative to med's but the cytoxan wasn't too bad, and I've had so many IV's in my life, that it didn't bother me. So far the cytoxan has kept me the same. But there are side effects of being on it too long, and they want to avoid that if we can. so next month is #9. Once a month. It's not as bad as I thought it was gonna be. With this disease you just never know how meds are gonna do. Everyone is different. But I hope you can keep off of serious meds like cytoxan for as long as possible. I have had bowel problems all my life, so being in the bathroom won't be nothing new. But it is a great inconvience. Thank goodness for the new anti-diarrheals!

Well take it easy! Thanks!

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