Medicine

[Blessed25diva]

Do. Any one of you guys take mmf 500gram

[Kerrclan]

Hi. I’ve been on Cellcept brand (MMF) for three years. Dose increased over year ago to 3grams daily (started on 500mg initially) I’m lucky not to have had any real side effects to this drug despite the large dose, just mild gastrointestinal symptoms. Prior to Cellcept I tried methotrexate, then azothiaprine without success. These drugs work at a cellular level so it takes months to gauge any Great improvement in symptoms. I think as patients we measure quick fix symptom relief such as pain, stiffness and general function with quality of life. Be patient, attend monitoring appointments and I wish you luck.

[Blessed25diva in reply to Kerrclan]

Ok thank you so it control your lupus

[Wendy39]

Hello. Yes. I’m on MMF but I’m on 3g a day, ie 6 of the tablets a day. I’ve been on it for 18 months. I also take hydroxychloroquine and mepacrine. Have you only just started the MMF? Are you on Hydroxy too? Wendy

[Blessed25diva]

Hydroxy yes

[Blessed25diva in reply to Blessed25diva]

Am on MMF for 3months now .....does it work for you

[Wendy39 in reply to Blessed25diva]

It took a very long time for me to feel it was making a difference. Probably around 6 months. Unfortunately at the time the Hydroxy and MMF didn’t keep it under control enough and mepacrine was added in. I’ve now had the best few months I’ve had for quite some time, thanks to the 3 meds. At my next Rheumatology appt we will be looking to reduce the MMF very slowly, to try to find a lower level that still controls my lupus. I can’t stay on 3g a day forever. It sounds like it could be early days for you. Give it a little longer. It seems to take a while to build up in your system. The steroids should help you in the meantime. I think you said you’re on 20mg. That’s quite a good dose. I have previously been on 20mg of steroids and I felt good. Any other questions, please ask.

[Blessed25diva in reply to Wendy39]

Going on check up next week

[Blessed25diva in reply to Blessed25diva]

Do you high blood pressure

[Wendy39 in reply to Blessed25diva]

I’ve only ever had one high BP reading. Mines usually good.

[Kazunlocked in reply to Wendy39]

I was on 2000mg a day for about 3 years. Rhemu decided to cut it in half to 1000mg p day overnight. Suffered no ill effects with immediate cut down of dose. I did however take a very long time to red Prednisilone from 80mg to 2mg. My best wishes to you.

[Wendy39 in reply to Kazunlocked]

Thank you. I’m not looking forward to reducing it all. We’re all different and our disease activity is different. I just look back and know how poorly I was before they added the MMF and mepacrine. I don’t want to be like that again. I’ve been told I can reduce slowly to find the right level for me now. I have had courses of steroids in the past and I love my energy levels etc on those but have never been on them long term. After two 5 week courses of 20mg and tapering, I was told no steroids long term, MMF is also known as a steroid sparing agent. Good to know you can cope on a lower dosage though. Best wishes.

[Blessed25diva in reply to Kazunlocked]

Thank you. .....

[Blessed25diva]

Have bleesed morning