Systemic sclerosis and mycofit

[Lo1234]

I was on pulse therapy with cyclophosphamide infusion but the cycle of cyclophosphamide has been already finished so I have been prescribed mycofit by my doctor but this medicine cause some intestinal bowl problem and also some potential side effects like vomiting, nausea also increase the risk of skin cancer. Has anyone find some side effects after taking this medicine. Please give me a piece of advice.

[trunchalobesity]

I’ve had cyclophosphamide by infusion two rounds of 6, methotrexate orally and have taken mycophenolate for over ten years at the maximum dose, it has been a game changer and has saved my life literally. From failing lungs to improvement and now plateau.

All the above drugs have increased risk of skin cancer but we should all look after our skin. I’ve not had tummy troubles associated with the drug but do have well managed SIBO from my scleroderma.

My advice is do as your Dr suggests they are the only person who has your full results and histology.

We can only tell you how this multi faceted disease effects us and how drugs have effected us.

For instance I had liver problems with Azithioprine, for others it’s great.

Good luck and best wishes x

[OldTed60]

I have tried all apart from Cyclophosphamide - soon to start Rituximab as well as the Mycophenolate - which for me has also been a game changer. However the brand you are prescribed can be the problem if there’s a bad gut reaction. I was switched around all the time by my former pharmacist - from Myfenax to Mycophenolate Mofetil to Myfortic.

All of these were hard for me to swallow and sometimes even got wedged in my oesophagus which was scary. Finally I asked my GP’s pharmacist for a trial of CellCept brand as a friend and I compared notes and these were slimmer - but much more expensive from NHS perspective. Since then I’ve been told the pharmacist was wrong to switch about and I should always have had CellCept - which I take at maximum dose now with no side effects or problems swallowing at all.