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July 10
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Answer Summary

Members responded with reassurance to a question about starting Cellcept, with several sharing that they have taken it for many years with few... Read more

Members responded with reassurance to a question about starting Cellcept, with several sharing that they have taken it for many years with few or no side effects, and one noting a patient who has been on it for 25 years. A helpful tip was shared about Myfortic, an enteric-coated alternative for those with stomach discomfort, and members emphasized that dose adjustments can be made if needed. A recurring theme was the importance of self-advocacy, especially for one member in rehab who was encouraged to keep asking staff to restart her Cellcept to protect her kidneys.

A MyLupusTeam Member

If you have GI discomfort, there is another form of it called Myfortic, which has enteric coating, so it passes through the stomach to the small intestine where it is absorbed.

July 10
A MyLupusTeam Member

@TeresaAimer2--Since Cellcept is critical for treating your nephritis, it's reasonable to ask the nurse to call the doctor to request the order. Please let them know how important it is to prevent further kidney damage.

July 14
A MyLupusTeam Member

Hi Niranjana, doc is concerned because dsdna has never been below 300,and bloodwork is consistently abnormal. This has been ongoing for 4 years..

July 10
A MyLupusTeam Member

I have been on it for 18 months with no issues whatsoever. I really don't have any side effects.

July 10
A MyLupusTeam Member

@A MyLupusTeam Member, ive actually been temporarily off celcept for my surgery i was suppose to be off of it one week before & 2 weeks after the surgery . So i should of started it back up 2 weeks ago , im in a rehab they havent added it, i guess i need to wait until im released from the rehab when ever that is. Im hoping soon but they have ssid nothing as to when ill get out maybe they want me to have the extensive physical therapy & want me to be able to move my arm first i have no idea i wish they would let me know . Ill try not to worry about the swellng ive never seen them swell this bad before.

July 12

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