Micofenolat Mofetil

[FelixFelicis]

hello everyone,

I have been diagnosed with progressive systemic sclerosis. And I’ve been recommended to take micofenolat mofetil (2g/day) as my scleroderma now progressed to lungs - peripheral stage.

Anyone on same treatment ? I’m curious about similar cases. I must say I’m quite stressed and worried about this drug and it’s side effects.

Thank you !

[Agedbiker]

Hi Felix. I too have scleroderma with lung involvement. I was initially put on a 6 month course of Cyclophosphamide and then I was put on mycophenolate mofetil 3000mg daily. It has slowed the deterioration in my lungs and continues to keep it to a minimum rate. I have been on prednisolone daily throughout. Side effect wise I have had no real issues. I have some gastro involvement anyway with the scleroderma but the Mycophenolate has not had any noticeable bad effect. O am now coming up to 3 years on the Mycophenolate. My rheumatologist monitors my regular blood tests, now every 3 months just prior to re prescribing it. If it doesn't work for you there are many different alternatives and as this condition is unique, what works for some won't necessarily work for others. I hope you find something that works for you.

[FelixFelicis in reply to Agedbiker]

Thank you! Very helpful, wishing you all the best 🙏🏼

[Redwine53]

Hi Felix like the Agedbiker I have been on mycophenolate for nearly three years , 2000 mg daily and I seem to be fine on it, I started off slowly on 500mgs a day for a week and increased by 500 kgs weekly u til I reached 2000mgs. I got a bit of a rash across my stomach when I first started but it soon disappeared.If you are on antibiotics you stop the mycophenolate until you have finished the course, and no problems there. At the moment I am not taking it as just had my 5th jab and advised by rheumatology to stop for one week.

I don’t have any lung involvement atm so can’t help on that.

Good luck I actually love mycophenolate as I reckon it’s saving me, Don’t know if that is true though.

[FelixFelicis in reply to Redwine53]

Thank you for your kind reply! Very helpful🙏🏼

[trunchalobesity]

I’ve been in the maximum dose of this since it was first trialed. Which is 1.5g twice a day.

It has been a game changer for me.

I was diagnosed with Scleroderma 21 years ago and presented with ILD lung fibrosis.

This was worsening year on year.

Despite infusion of methotrexate and two six monthly rounds of monthly infusion of cyclophosphamide nothing was halting its progress.

I trialed mycophenolate and it’s been a game changer. My lung function has improved and I’m still active.

I can’t say I’ve experienced any side effects.

Good luck with your decision but for me I’m fairly certain it’s saved me x

Best wishes x

[FelixFelicis in reply to trunchalobesity]

Thank you a lot! It’s a good news ! My lung fibrosis is peripheral and I hope it will stabilise 🙏🏼You reply helps me a lot!!! Much appreciated 🙏🏼🙏🏼

[trunchalobesity in reply to FelixFelicis]

I really hope you do well on it , it’s a great drug for ILD x

[Debbiedoughnut]

Hi, I have exactly the same diagnosis as you and take Microphenolate which I have now been on for over 5 years. I have not noticed any really significant side effects to this but my lung problems have continued to progress. I am now on full time oxygen which is not a lot of fun! I suggest you give the meds a try and see how you get on. Get out and enjoy yourself while you can. Best of luck. xx

[FelixFelicis in reply to Debbiedoughnut]

So sorry to hear it’s been progressing ! 😞Keep the faith and be strong🙏🏼Thank you for your reply, I wish you all the best ❤️

[GGhere]

Hello Felix Felicis, I have been taking micophenolate mofetil 500mg x 2 tablets per day for two years. Consultant wanted me to take 4 tablets a day but I still only took 2 as I was dubious about side effects. It did improve my symptoms considerably even though I only took 2 per day - however, and this is probably a peculiarity on my part so please don't feel alarmed... now it has been withdrawn altogether as I have developed liver problems and they have not yet decided if it is caused by the micophenolate. I've been off the micophenolate for 6 months now and still await a decision from consultant whether or not to resume taking it. They seem concerned about my regular blood test readings but I've forgotten what it is they said there was too much of in my blood. (I'm 82 and prone to forgetting stuff 🤷‍♀️). I'm hoping for a decision soon. Best wishes to you.

[FelixFelicis in reply to GGhere]

Thank you, Betsie. Hope you manage to get an answer soon, 6 months seems quite a long wait. All the best!

[sivgcv]

For me was the best treatment. I really recomend it.

[FelixFelicis in reply to sivgcv]

Good to know! Thank you

[sivgcv]

It saved my life!!!

[Bluefoot]

Hi Felix, i have been taking Cell Cept/mycophenolate for years no side effects, but i don't know if it is really working. They also have me now on Rituximab 6 hr infusion ad again 2 weeks later, every six months. i was before taking an injection every week of Actemra and they stopped that for some reason. Yes, they check my blood every few months.