Mycophenolate mofetil prescribed for DLE

[Biri]

Hiya

Just been prescribed Mycophenolate mofetil for DLE along with weekly blood tests to monitor something or other (brain freeze -apologies!).

Has anyone with DLE seen an improvement in their condition using this drug and if so how long did this take?

Currently about 50% on one side of my face is scarred with 20% on the other plus various bald patches on my head. It doesn’t really bother me but am keen to avoid it getting too close to my eyes so would be interested in hearing others experiences with this drug positive or otherwise.

Thank you!

Andrew

[Hidden]

Hi Andrew, I've been on MMF for about 7/8 weeks now and last time I was at the hospital the early signs were that it was doing what it was supposed to be doing. No obvious side effects that I've noticed and was told that it has a 90% success rate in patients. I'd rather be taking this than another dose of cyclophosphimide(excuse the spelling) less needles the better.

[Biri in reply to Hidden]

Thx K

Sounds positive. Will report back.

[Hidden in reply to Biri]

Good luck, hope all goes well

[panda2]

Hi Andrew,

I've been on MMF since May. I have UCTD, not DLE, however I experienced lots of rashing. For the first month+ the rashes were still coming non-stop, but after a stop-start change of the formulation due to reaction, which had me off them for a month, by August/Sept and at full dose, the rashes all but stopped. I am SO much better! Wishing you the same result. Let us know how you go.

P x

[Biri in reply to panda2]

Thx panda2 😀. Will do