Mycophenolate Mofetil experience with lupus nephritis.

[Ralby1]

Hi all, I have recently been diagnosed with Lupus Nephritis and unfortunately the steroids i was on have damaged my kidneys. They have put me onto Mycophenolate Mofetil just wondering if anyone could give me their experiences with Lupus N or the Myco drug. lifestyle change?/work?/mood? Any help is appreciated x

[Melirm]

Hi, I take MMF for my Mixed Connective Tissue Disease and i also have CKD, Colitis and Coeliac disease.

I have to be honest, before I was taking MMF I tried all the usual drugs but nothing seemed to work long term. When I changed to MMF it was just amazing. Everything settled. It was a life changer. It helps with all my conditions. (I also take 5mg if prednisone daily).

It means I went from working part time to working work full time, I still get some flares of course, but they haven’t been so bad. My mood has improved and I honestly couldn’t believe the difference it has made. I was in such bad place before I started on this.

I hope that you have a similar good response to your MMF. Good luck x

[Ralby1 in reply to Melirm]

Thankyou! x

[KatieRL]

I have SLE which damaged my kidneys back in the day. My SLE has also caused allergies to many drugs, however I’ve been taking Myco for over 8yrs and it’s one of the few drugs that (so far!) has caused no side effects at all. However, we are all different and what suits one person, doesn’t agree with others. I’d follow the advice of your Lupus and/or renal professionals as they are the ones who know you best. I wish you well and stay safe.

[Ralby1 in reply to KatieRL]

Thankyou! x

[ijeasike]

Hi, I have SLE, for 9 years now and I started off with Hydroxy chloroquine which I still take now and mycophenolate. It wasn't working for me so my doctors changed to Azotiayprine, which made me neutropinic. But after lots of trial of drugs and infusion that didn't work am now on bulimimab which I have been on for 3 years now and my lupus has been stable.

I guess with lupus ur doctors have to try out alot of drugs to find out which best suits you. Good luck xx

Ije

[Ralby1 in reply to ijeasike]

Thankyou! x

[Babydriver012]

I take mycophenolate after azathoriprine didn't work too well for me. I'm on 5mg steroids as well as hydroxychloriquine and they seem to work for me my bloods are pretty stable.

I

[Ralby1 in reply to Babydriver012]

i'm currently on 30mg of steroids! but Dr is trying to get me off them ASAP hence the mycophenolate. Thankyou for replying!x

[alice_sportyauthor]

Hi

I was prescribed hydroxy chloroquine first and it made my brain fog clear, but I was still in a lot of pain with my joints so they put me on mycophenolate as well. I found mycophenolate a bit of a struggle to begin with, gave me a feeling of vertigo, upset my stomach, and initially didn’t seem to have much impact on the sore joints that the Lupus gave me. But I stuck with it, I now take half the dose the Dr recommended and feel much better, little joint pain or swelling, no vertigo.

I almost feel human again.

[Ralby1 in reply to alice_sportyauthor]

i think to feel human again is the goal haha, thankyou for the reply x

[Marlena84]

I am on MMF for 7 years now. I am feeling great. No side effects for now. For few years together with steroids and Hydroxy chloroquine. For last 2 years we are lowering dosage as my blood test are amazing. No steroids for a year now.

[Drakula]

Hey Ralby1

At what gfr your were diagnosed and what is your present gfr?

[Ralby1]

Hi, my gfr when diagnosed was 700+ it is now at 140 ish. Still high but loads better! hope this helps