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MMF/Cellcept side effects

539 Views 8 Replies 8 Participants Last post by  dmb 123
I was diagnosed with SLE four years ago and have been taking Methotrexate 25mg injection per week, prednisolone, plaquenil as well as many other meds. The steroids were starting to cause a lot of bad side effects so I was tapered down to a low dose which subsequently flared my Lupus, Sjorgens and Raynauds.

My doctor started me on Cellcept a few weeks ago and I am having serious stomach issues with it. I feel as though I have had a gastric bypass as my stomach is so inflamed and I cannot manage more than a few mouthfulls of food. In the last few days I have also started vomitting, although I feel much better after doing so. I am persisting with the cellcept as I know I have to stop my immune system working overtime.

The nurse who gave me my education before taking cellcept told me I MUST take the cellcept with food. However, I have noticed one or two people on these boards have advised otherwise.

I am also extremely tired with the cellcept and am falling asleep many times during the day.

Any advise would be gratefully received.
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I take cell cept 2000mg a day. I have found that I must take this on an empty stomach in the morning. I take it and wait about an hour then I can only drink tea or coacoa. After that I am fine. The afternoon dose I must also take on a reasonably empty stomach ( at least 2 hoiurs after eating and one hour before dinner.

I suffered from all kinds of issues when I started taking this until I found what worked for me. I would vomit, get terrible headaches, be over sleepy if I took it too early or too late.

Each of us are different and we have to play with schedules, I went through this when I started the med, and again after each dosage increase.

I know that there are some people who cannot tolerate the medication no matter what they do.

If you are committed to giving this medication a fair shake, you need to try all of the different times and combinations (early/late...empty/full stomach...with certain liquids...etc).

Do not hesitate to discuss these issues with your doctor, they must be made aware of what is happening as these may be signs of a more sxerious side effect or drug interaction. I was a daily pest for the first three weeks until I found what worked.

This medicince has been very effective for me for almost 3 years, although I may need to make some changes in medication, I would strongly recommend this as a steroid and toxic sparing alternative, if you can tolerate it well.

Please feel free to PM me if I can be of any further assistance.

Good luck - and don't forget to discuss this with your Dr as soon as possible.

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