Mycophenolate Mofetil

[Wangpaupau]

Due to allergic reaction to Rituximab, my daughter didn't finish the 2nd dose of her cycle. RA consultant has now prescribed Mycophenolate Mofetil 500mgs twice a day. Also titrating Prednisolone from 20 mgs to 15 mgs with a view to going off it. Has anyone had any good response with this medication?

[oldtimer]

It isn't a frequently used medication so you might find that it's worth searching for past posts. If you put the medication into the search box top right they should come up for you.

[trunchalobesity]

I’ve been on mycophenolate for ten years and I’m on the maximum dose of 1.5g twice a day. This has been for scleroderma although I also have R.A.

It has been a life saver for me, literally as I have lung disease and my lung function stopped declining and improved. I’m also on a maintenance dose of prednisone 7.5mg.

Can I ask what side effects your daughter had with Rituximab as this has been suggested for me.

Thank you and I wish your daughter every luck and best wishes x

[Wangpaupau in reply to trunchalobesity]

Hi trunchalobesity, thank you for your reply & good to know that you have benefitted ed from Mycophenolate. My daughter has Pulmonary Hypertension too as a result of MCTD. So on medication for PH as well. Hopefully her lungs will benefit from Mycophenolate too.She was fine with her 1st cycle of 2 doses last year.

However in April a week after her 1st dose she started having whole body itching, joint pain on her hands & shoulder( not sure if related to lowering Prednisolone by 5mgs)generally very tired. On the morning of the 2nd dose, no sooner have the infusion started, she started itching again, this time throat as well, breathing difficulty&rapid heart rate. Infusion was stopped immediately, was treated for allergic reaction & stayed overnight in hospital for observation. Each one of us are different & many people have & are on Rituximab with no problem.

If you are doing well with Mycophenolate, why is your Rheumatologist considering Rituximab?

[trunchalobesity]

I’ve multi organ issues as well as joints and I’ve had problems for a while.I think they are trying to arrest the diseases and will have the drugs together x

[65_women]

I have not had any problems with RituximabI hope you will find a med that works for your daughter. 💕

[DeeSending]

Greetings WangpaupauI cannot tolerate Mycophenolate as it gives me UTI amongst other things. I have been on prenisolone for 3 years starting on a major dose of 50 mg per day for 4 months which was hideous and now reduced to 8 mg for the second attempt from 10 mg. I am having more breathing and mucus problems on this lower dose and many aches and pains once masked by the steroids causing problems. I am a IPF/emphysema (never a smoker) patient plus have Crohn's disease. I have found that the doctors are more concerned than I am about side effects of prednisolone. For me, quality not quantity of life is paramount. Good luck finding a balance!

[Mmrr]

I was started on mycophenolate mofetil a few years ago, but unfortunately it did not agree with me, I only managed a few dosages.

[Helen-NRAS Moderator]

If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk.

[Wangpaupau]

Hi HHWS that's sound advice. Thank you. My daughter has been working on eating healthily with her 7 a day & organic food whenever possible & reducing processed foods.