cutaneous lupus

[Nellons]

Hi, is anyone taking the immunosuppressant mycophenolate for cutaneous lupus /discoid lupus ? If so, has it worked and what side effects ?

Many thanks

[camalex]

Hi, I take mycophenelate and it has been a game changer for me. It’s the only thing that cleared up my cutaneous lupus and keeps it under control. I’ve not had any side effects whatsoever. I was on 750mg twice a day, now down to 500 twice a day as a maintenance dose. None of the steroid creams or prednisolone worked for me, but this does. I do hope you have the same experience as me, as I know we’re all different. By the way I took it all the way through the pandemic and lock down and did not contract Covid or any other nasty bugs or infections. Ironically post pandemic , I did have a gap in taking it as my skin had been so good for such a long time and when off it came down with Covid and a couple of nasty cold/cough infections ! Good luck.

[Nellons in reply to camalex]

Thank you so much for your reply. This will reassure my daughter so much as nothing else has worked and so ill on methotrexate . Fingers crossed it will work for her . Thanks again

[Loopyru]

hi yes I was on this for many years with no ill effects apart from feeling really sick for the first few weeks but the nausea did then go. It really helped my skin but regular monthly blood tests are needed for a while. I hope it works for your daughter.

[Nellons in reply to Loopyru]

many thanks

[LittleAngle]

Hi, I take mycophenolate and I have been on it for 2yrs. Started with 1g twice daily, couldn't tolerate the high dose anymore, then it was reduced to 1.5g daily. So far, no ill effects and keeps the lupus under control. And I noticed I do well with a particular brand, so I just get them to give me that brand when I need a refill. All the best.

[Nellons in reply to LittleAngle]

Thank you. What brand is that ?

[LittleAngle in reply to Nellons]

I do very well with the Ascend brand.

[Sonic6]

Hi I've been on MMF for approx 2 yrs, I have SLE, Stage 3a CKD. I have been in remission for well over a year. I would recommend MMF. I'm still on 1g twice a day. The only side effect I have is with my morning dose, where I have to take omeprazole then the MMF 15 mins later, otherwise I get abdo pain. Good luck for your daughter