Amanda Thorpe

Back on the good stuff

20 posts in this topic

Hello Lizzie


Sorry you have been so ill and that you have to stop taking a drug that was helping you.


You are obviously one of the "one in a hundred thousand" people who get the weird and unusual side effects. :lol:


My mother once took a medication that had a rare side effect of "black tongue", no idea what that was and she didn't get it so my curiosity was never satisfied, how selfish can you get!


Take care.



Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda- Cellcept needs to be increased slowly. So, I was supposed to start on 1000 and after a week with no bad effects to go to 2000. However, knowing the slower one goes up in general with meds, unless it is urgent you go on the whole dose ASAP, I started at 500 for a few days, then went up to 1000, then 1500 for a few days, etc... I think I avoided bad effects as my body got used to it in a more gradual way. Shirl.

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Hope you are much better by now. It is nice to find something that works huh? Wish good things for you; thanks for all your posts and the encouragement you give to everyone. Thanks for the easy laughter too.


Welcome to all the newbies too.


With gentle thoughts,



A happy heart is good medicine.

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Hi Pdfungels;


So sorry to hear of all of you problems with your meds. I have been ill with lupus diagnosed in 1985 and scleroderma diagnosed in 1990. Over the years my health has gotten worse but I manage to stay stable due to what I believe is my combination of Cellcept and injections of Methotrexate (couldn't take it orally). I was put on these two drugs by a Mayo Clinic Rheumatalogist who I saw for a second opinion since things were going badly for me at the time and I thought I needed the input of a second doctor. Right now I have many different specialists who keep in touch and share info about me. It helps to have more than one doctor in your court sharing thoughts, ideas, and lab work about you. I do hope you find the right dose of meds and begin to feel better. Lets face it, no one likes being sick :(

Warm Hugs,


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