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Hi Shirl, I was Cellcept until January 2009 - dose of 1 gram a day. I had to stop it beacuse it caused me to have an oesophageal haematoma (which I hasten to add is an extremely rare occurrence). while I was able to take it , it was very effective, my skin really improved and I felt really well on it. I am now taking Methotrexate and find it causes much more in the way of side effects and lowers my white cell count more than the Cellcept- I have certainly had more infections than when taking Cellcept.

 

Lizzie

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Hello Shirl

 

I took Cellcept (mycophenolate) for 10 months with the dose starting at 500mg and building up to 2grams a day. According to the leaflet in the packet it's also used by people who have had transplants and they take a much higher dose than 2grams a day. I had to stop taking Cellcept in favour of methotrexate because it was causing me frequent, unbearable headaches at any dosage.

 

All of us on immunosuppressants know we have to walk the fine line between suppressing the scleroderma and living with the results of a compromised immune systems e.g. infections. It's a case of deciding whether the benefits are better than the side effects. It may be possible to lower the dose you are on but this is best decided between you are your rheumatologist. From what I understand, as a non medical layperson, the dosage you are on is normal for scleroderma but as I say if you feel the side effects are outweighing any gain talk to you rheumatologist about the dosage.

 

Whatever you decide do let us know how you get on.

 

Take care.

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Hi Shirl,

 

I believe 3g per day is a maximum dose.

 

I started with 2g and within a month started 3g on advice from my rheumatologist.

 

I had to reduce and stopped completely when my white blood cells started staying too low.

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Hi Shirl,

 

I have been on 2g Cellcept (and Plaquenil) for just over a year now, and have had no side effects at all. I have had improved energy levels and reduced skin tightening, so I'm happy with that!

 

My immune system also seems to have gone into meltdown, as I have many overlapping autoimmune conditions to go with my diffuse sclero. I have type 1 diabetes, sarcoidosis in my spleen, hypothyroidism, Lupus, autoimmune hepatitis, kidney failure, peripheral neuropathy, Raynauds and Sjogrens.

 

Despite all this, friends tell me I look well, and some days I feel really well. happy-day.gif maybe that's because I don't go out or see anyone on bad days!

 

Debs

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Shirl,

I've been on 1.5 grams twice a day for about 2.5 years. I've been on some type of immunosuppressant since August of 2003, so like you and the others, I am very susceptible to all sorts of disease because of a suppressed or lack there of, an immune system. I'm sorry to read that you have contracted pneumonia. Hopefully, you are being well taken care of and can get over this really soon.

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