Mycophenolate

[cathylou]

Hi,

I'd really like to hear people's experiences with mycophenolate please?

Thanks.

[KatieRL]

I also have SLE which has affected my kidneys. I have become allergic to many drugs, mycophenolate is one of the few drugs I have been able to take withou suffering any side effects. It has helped me keep my lupus in remission, and my kidney transplant healthy for a long time.

[cathylou in reply to KatieRL]

That's awesome. Great to hear from someone who has managed to go into remission. I'm so happy to hear your transplant has remained successful.

Xx

[Barbs51]

Hi Cathylou, I’ve been taking Mycophenolate for the last 18 months and for the foreseeable future for my lung disease which is secondary to my Sjögren’s syndrome and I tolerate it well with few side effects. I sometimes suffer with upset stomach but only now and then. Good luck 🌷

[cathylou in reply to Barbs51]

What lung disease do you have if you don't mind me asking? Xx

[Barbs51 in reply to cathylou]

It’s inflammatory lung disease caused by the autoimmune Sjögren’s but I have some pulmonary fibrosis too. I had intravenous Cyclophosphamide for 6 months prior to the Mycophenolate and it all certainly seems to be keeping things from escalating. Xx

[field]

Hi Cathylou,

Everyone reacts differently with meds.

I have lupus and lung disease and many other lupus symptoms. I am hypersensitive to meds so didnt tolorate mycro very well and had to stop taking it. You wont know how u will react to it untill u take it.

If u do decide take it, make a note of any side affects and talk to doc about it.

All the best

[cathylou in reply to field]

That sounds like good advice, I will do that thanks. They won't start me on it until I'm infection free. They still think I have a chest infection after 9 weeks, 3 lots of antibiotics and high dose steroids!

[field in reply to cathylou]

Feel so sorry for u. I too have had a bug for six weeks now. I reduced my steroid to give my body a fighting chance. It did help but my raynauds started flaring up so had to put steroids back up again. Just cant win with this awful disease. I hope things improve for u soon.

[cathylou in reply to field]

Thank you, you too. I keep getting terrible wobbles. Can't even walk downstairs. No idea what the cause is but it's driving me nuts. I'm fighting it but I think depression is beginning to set in because I feel so useless xx

[field]

Living with this illness is so frustrating. Depression usually follows a flare for me due to disease activity, which is often compounded by the way it makes me feel. Remember that any one who has to deal with our illness on a daily basis will feel like this from time to time, especially during a flare. The key is to give ourselves permission to feel what ever comes up until the storm passes, after which time more positive feelings will surface. In the mean time just be kind to yourself.

Give yourself a big hug from me.

Xxx