lizzie

Cyclophosphmide or cellcept?

5 posts in this topic

I have today received a call from my rheumatologist to say that he wants to admit me asap to discuss options and start therapy to try and stop progression of skin changes I have had in the last few weeks. Basically the options seem to be cyclophosphmide (which he seemed to favour) versus cellcept. Obviously I'm not really keen to have either as both can have nasty side effects. However, given that it is being recommended that I have one or the other I need to choose. At the moment my preference is for cellcept. This is mainly based on the fact that my son had cellcept for glomerulonephritis and a) it seemed to put his disease into remission and B) he really had very little in the way of side effects. I'm just wonderingwhat other peoples experience of either drug is ? I would be grateful for your input.

Lizzie

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I've had both. I had cyclophosphamide in the beginning of my treatment for 5 months but then had to stop due to it attacking my bladder. I developed cystitis and it was from the cyclophosphamide. Apparently it can cause bladder/kidney cancer so my doctor then put me on Cellcept. I have been on that for about 6 months and have no side effects that I know of. I have some noticeable skin softening only on the top of my hands. The rest of my skin involvement, which is pretty extensive, is still really bad. I still deal with muscle pain and fatigue but that is due to sclero itself and not from the Cellcept. When I was on the cyclophosphamide I was past fatigue. I would actually fall asleep talking to my family. I also had some nausea with it.

Good luck on your decision. I however in my case have had better results from the Cellcept.

Warm hugs,

Peggy

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Hi Lizzie,
Both drugs are very different. Cyclophosphamide is considered the sledge hammer for those of us with lung problems which is then followed by Cellcept which is more of the maintenance drug once the disease has been slowed by the cyclophosphamide -- at least for those of us with lung problems. For some reason, I did not think that cyclophosphamide was used for those with skin problems -- for some reason, I thought Methotrexate was used for treating skin thickening -- but I may be wrong as my number one problem is my lungs and GI tract followed by the skin thickening. I did do 6 months of IV cyclophosphamide and wished I could get quarterly doses as my breathing improved slightly and my skin softened slightly. Unfortunately, I can not get any doctor to RX the quarterly dose of cyclophosphamide. Cellcept caused break through bleeding for me and I was pulled off it within 4 weeks. If you decide on the cyclophosphamide, make sure it is by IV and by "meter squared" meaning that your dosage will be based on your weight. Good luck in your decision. Gidget

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Lizzie,
That's a hard decision because there are pros and cons to both. You might want to check out the information on our Immunosuppressant page. There is a section on both cyclophosphamide and cellcept. There is a study cited from last year that show significant improvements in skin score with cyclophosphamide. I didn't find anything for cellcept, but it could be in the abstract, but not in the ISN summary.

I've taken both for the purpose of stablizing my lungs. I have no skin involvement. I could only handle the oral cyclophosphamide (nasty stuff) for 3 weeks. Gidget mentioned it is a sledge hammer to the immune system and that's a great description. I became quite ill and had to come off it. I refused to go back on it and convinced my rheumatologist to put me in cellcept. That was about 16 months ago and have handled it quite well. We are all so different and so are our diseases, so do your homework and have some really serious discussions with your doctor.

Good luck Darlin'. I hope whatever you decide that it works for you.

Big Hugs,


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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Peggy, Gidget, Janey, thanks for your input. I had almost decided that Cellcept was the way to go, then I spotted the thread re the FDA warning on Cellcept! these decsisions can be so complicated sometimes.

lizzie

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