Hi there
I have limited scleroderma and I have been asked if I want to go on a trial study for Mycophenolate. Just wondering if anyone is on this drug and the side effects of it. Or if anyone is on the minimise trial and how you are getting on with the trial drug.
Thank you
Hi I will be starting on this I also have limited scleroderma.
Hi, many people with scleroderma are on mychophenolate, to control their disease with little side effects. I don’t think it’s a new drug.
been on this tablet about 12 years and never had any problems
I’m on the trial and so far so good, so go for it x
I used to take this, and although i didnt feel any bad effects, it made me neutropenic, and so they stopped it. My white blood count rose, then they started it again and it fell. I am now taking azothioprene. I think that its important to have regular blood tests when you are taking it
I trialed this drug 10 years ago
It was a game changer for me. My lung disease not only plateaued but has slight improvement
No side effects for me
Strongly recommend
I'm on the trial, have been taking it for 2 weeks so still on the starter dose, but have had absolutely no side effects. Have to try to remember to put on a sun hat and Factor 30 sunscreen now the spring is finally here! And variably I remember it's an immunosuppressant and wear a mask in enclosed spaces (but very variably!)
I took asked on here and my local support group before going on it - there were one or two who had not got on with the drug, but the overwhelming feedback was positive and encouraging me to go for it.
I know the MINIMISE Team are still very keen to recruit more people for the trial!
I have systemic scelerderma and on 2 mgs of mycophenolate , and have been for nearly 4 years. I have been fine. You have to stop taking it if on antibiotics and for one week after having the Covid jab.
These pills are issued by the hospital not the gps, and I have a blood test every three months, for a new prescription.
Good luck.
Another one on Mycophenolate. I have had no problems with it at all. It was initially prescribed by my rheumatologist, and when the frequent blood tests showed all was fine, my GP now prescribes it and I have three monthly blood tests.
Wow! Unfortunately in Ireland Mycophenolate is deemed a high spec drug so GPs aren’t allowed to prescribe it.
That’s a shame. I doubt GPs can initially prescribe here ( quite rightly) but most medications initially prescribed by a hospital consultant are then transferred over to a GP for a regular prescription.
Such a good idea! Because I’ve just moved from the UK back to Ireland I’m chasing to get a rheumatologist to prescribe the mycophenolate and to be seen by an oncologist just so I can get a prescription for a subcutaneous injection I need every 4 weeks to go with my post-breast cancer meds. If I can’t get the injection (which nurse prescribers can prescribe in the UK but GPs can’t in Ireland!) I’ll slip back pre-menopause and my meds won’t block the hormones that grew the cancer. It’s awful. Things I took for granted before.
I’m so sorry you’re in a position to need vital medication and are having to chase it yourself rather than actually getting the care you need. The NHS has many faults but we sometimes forget its good points x
Absolutely love the NHS! I used to work for them. ❤️❤️❤️
ive been on mycophenolate 3000mg daily for systemic scleroderma no side effects, taken in 2 doses 1,500mgs morning and night,regular blood tests every 4 weeks to monitor levels
This trial is important as the previous trials of mycophenolate were largely with people who had acute diffuse scleroderma, not the limited type.
I’ve been taking 2 500mg tablets twice a day for about 8 years now. Side effects have been limited. Initially I had some hair loss but added folic acid once a day, which slowed the hair loss.
I have diffuse scleroderma, and I have been on Mycophenolate since 2017 with little side effect which is light nausea in the morning.
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