Mycophenolate advice

[Ajackson10]

Hi - just messaging for advice on behalf of my mum who's had Scleroderma for about 30 years.

Her lung issues have been getting progressively worse over the last few years. She has had a CT scan today showing progression of fibrosis and scarring, and also a mass which they now need to rule out anything else.

She has been prescribed Mycophenolate, which they have said could potentially significantly slow down the scarring and fibrosis.

Unfortunately she has a very low tolerance to most medications and usually experiences side effects which put her off taking stuff. We are all very worried about her not taking this as her condition seems to be deteriorating a little bit faster more recently.

Would anyone have any experience of taking this medication, i.e. possible side effects or good progress on this that they could share. Thank you in advance.

[OldTed60]

Hello there. I’ve been taking Mycophenolate (brand CellCept) for 3 years at maximum dose - now down to 2g daily. I’ve not had any side effects at all having tried 4 others first and had really adverse reactions. For me it’s been great. Best of luck for your mum 😊

[Ajackson10 in reply to OldTed60]

Thanks so much

[Lupiknits]

Like OldTed I’ve been on mycophenolate for over a year. 2g daily. I’ve experienced no side effects at all. I do hope this helps

[Ajackson10 in reply to Lupiknits]

Thank you 👍

[Jmrose]

I have been taking mycophenolate since 2016, I’ve had no side effects from the medication. My last CT scan showed no difference in the scarring in my lungs since 2016. I think the medication really helps. Good luck with your mom.

[Ajackson10 in reply to Jmrose]

Thank you 👍

[Redwine53]

Hello Ajackson 10, I have been taking mycophenolate for over 4 years, 2 gms, and haven’t really had any bad side effects. I had a rash on my stomach when I went up to 1g but it wasn’t itchy and soon disappeared. Cows milk didn’t really agree with me when I took the mycophenolate in the morning, but milk was fine later on in the day. People on the myositis FB site are all positive about it helping their lungs.

It takes about 3 months to be effective , there may be other treatments that act quicker if you are worried, I am not sure though.

Good luck to you and your mum. Please update us.

[Ajackson10 in reply to Redwine53]

Thank you so much this is very helpful 👍

[cls_98]

Hi. I understand your mum's concern re mycophenolate and the side effects, as I had them too. But I did go ahead and start this drug in February this year. Granted, my condition isn't as progressed as your mum's, but I just wanted to reply regarding the side effects concern. So far, I haven't had any side effects. I went ahead with the drug, as I thought that any advantage to taking the drug would far outweigh any possible side effect. I know that everyone's different and your mum must make her own choice. I just wanted to tell you a little of my story. All the best.

[Pomoc]

I am sorry about your mum and hope the scan does not show anything worse. My wife began on this drug early January, stepped up after 1 month to 1g daily, she is 66 and I have to say the side effects were numerous and debilitating. She was only diagnosed last year but got worse before this. We do see after two months a reduction in the coughing, thank God, and tailing off of some of the worst symptoms. Best of luck.