Mycophenolate side effects: After 28 years of... - LUPUS UK

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Mycophenolate side effects

LilyMistri2 profile image
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After 28 years of taking azathioprine, my doc took me off it recently and made me start Mycophenolate 500mg x 2 daily.

From the first day I started Mycophenolate I have the following side effects: feeling freezing cold all the time, cold feet and hands, stiff muscles, waking in the night wide awake, cramps, mood drop, physical symptoms of anxiety like muscles can’t relax and feel very tight and stiff, and constipation.

Have you had any of these? Are any of these due to going off azathioprine cold turkey? Should I tell my doc or just bear with these hoping they’ll die down. I don’t like these. Do they reduce?

Thanks xx

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Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi LilyMistri2,

Are you still experiencing the symptoms you listed above? Have you spoken to your doctor about it?

There are potential side effects of Mycophenolate which you may be experiencing. I have listed the common to rare side effects of the drug below:

Common side-effects: nausea, vomiting, loss of appetite, upset stomach and weight loss, infection

Uncommon side-effects: anxiety, tremors, rash, low white blood cell count, low red blood cell count

Rare: cancer (lymphoma, skin cancer)

According to The Lupus Encyclopedia, it is advised to avoid cat's claw and Echinacea when taking this medication and to take the medication after eating. This can help avoid an upset stomach.

Taking smaller dosages of Mycophenolate can improve symptoms - it is important that you discuss this option with your doctor before altering dosages yourself.

I am not medically trained, therefore, I cannot comment on whether or not your symptoms may be due to stopping azathioprine. Your GP or rheumatologist would be the only person who would be able to specify this.

Please let us know how you get on, wishing you all the best.

LilyMistri2 profile image
LilyMistri2 in reply to Chanpreet_Walia

Thank you Chanpreet. Yes I do wonder if some are the withdrawal effect of the azathioprine. I will talk to my chemist this week and my consultant. Thanks for your help. X

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