Mycophenolate

[Sofi2610]

Hi. I'm new to the group. I was diagnosed 6 weeks ago with Lupus Nephritis, the membrane of my kidneys has been damaged. I've been put on mycophenolate (Cellcept) to suppress my immune system. Is anyone else on this and does anyone know if I will have to take this for the rest of my life? I've also been put on Prednisolone with many other meds as well!! It was all a big shock for me!

[Paul_Howard Partner LUPUS UK]

Hi Sofi2610 ,

Welcome to the LUPUS UK community forum. I hope that the mycophenolate treatment goes well for you. Please keep us updated with how you are getting on.

It is best to discuss what sort of duration you may expect to be on this treatment with your consultant because lupus presents differently in everyone and therefore prognosi can vary. There are people with lupus who experience periods of remission ranging from weeks to decades and they may be able to manage on reduced medication (perhaps just hydroxychloroquine) or nothing at all, just with monitoring. Other people may have less stable lupus which needs more consistent treatment.

If you would like more information about lupus nephritis, we have a booklet that you can read/download at lupusuk.org.uk/wp-content/u...

If you would like more information about lupus and LUPUS UK, you can request or download one of our free packs at lupusuk.org.uk/request-info...

[Sofi2610]

Thank you, I will download the Lupus Nephritis booklet and have a read.

[Dalilatm]

Hi Sofi2610 !

Keep positive. I was also diagnosed of Lupus Nephritis. Same treatment: Cellcept and steroids. And after year and half my kidneys were doing very well. I was in remission. Keep a good diet and close monitoring of your urine... and don't miss any pill!

Best wishes

[1sam]

Hi Welcome to the group Sofi2610

Take your time to adjust to the idea of having a name for your symptoms. You have the right to feel anxiety or fear or anything, just don't let those feelings win.

I was diagnosed with Lupus Nephritis about 1.5 years ago, it was a shock as you said. Cellcept has been good to me, but no idea if the treatment is for life ... well the way I see it is this: I drink water every day, I go to the loo every day, I eat and sleep every day, taking these pills is just something else I do daily and I rather take them because they keep me healthy

Sleep well, add little or no salt to your food, try to avoid caffeine (tea, coffee, soda/soft drinks) and see if and when your ankles/feet swell.

Good luck!

[Sofi2610]

Thank you for your support. I'm drinking more water than I used to, I never add salt to my food and I'm trying to eat healthily as I don't want to gain too much weight while I'm on Steroids! So hopefully I'm doing the right things. Just a bit concerned that since starting the meds my kidney function has worsened!! 🙁