Mycophenalate: Hi Is anyone on... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Mycophenalate

Diane50 profile image
3 Replies

Hi

Is anyone on mycophenalate and had problems with severe itching on face and neck and not so bad on the body. This is also accompanied by sores been on antibiotics three times since I've been on it which is 3 months,

Off to guys today to see consultant.

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Diane50 profile image
Diane50
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3 Replies

My sister was on this drug - she has Lupus and is also on steroids and is diabetic - it suppressed her immune system so much when she erupted in open leg sores it took 6 weeks of anti-biotics to get it better and she had to come off mycophenalate. She said she felt the best she had in years BUT don't know if was the drug or her diabetes or steroids that didn't help. Please have it monitored closely anf keep a diary for your consultant.

Zaney3622 profile image
Zaney3622

I have taken this for four years. I got monthly bloodwork to monitor and have had no side effects. The medication helped me tremendously. Good luck!

Diane50 profile image
Diane50

Hi to both of you sorry I have only just seen these replies.

After my third lot of antibiotics I have had to come off as the itching and sores got so so bad.

after two days off I woke with severe vertigo and been like it for 9 days just starting to feel better,

its weird how the drugs help some and not others,.

Thank you for your answers.

Zaney do you have lupus too or just APS ?

Diane

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