Increasing mycophenolate dose

Hi everyone, I've been taking mycophenolate for 6 months, 500mg a day. At my annual check up with the rheumy last week, she said that she felt it should be increased up to 1500mg over the next 4 weeks. I have limited and raynauld s and my fingers are normally tight although the tightness has subsided a little since starting the Myco. Is anyone else on this dosage and did you have any side effects? I've tolerated it quite well for about 4 months and am not sure what to expect with this dose increase. Thank you sharing.

9 Replies

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  • Hi Wengc, I am on 2000mg a day (1000mg in morning and 1000mg in evening) and have not suffered any side effects, so go ahead I am sure you will reap the benefits.

  • I'm also on 2000 mg same as fairy56 with no side effects and I am sure it is helping lessen my skin tightening. I have monthly bloods just to keep an eye on white blood cells and liver function - you should be monitored. I also have Limited SSC and Raynauds.

  • Hi Wengc,

    I have been on 1000 mg twice a day, and have been on Mycophenolate since March 2015 and this drug has really helped me, I was in a wheelchair prior to starting on this magic drug, by August 2015 I started using a walking stick. Getting the dosage right takes times but building it up was good for me. I don't seem to have had any side effects.

    Good Luck.

  • My daughter is on 1000mg am and pm for linear scleroderma and tolerates it well. Initially she had some stomach issues but now is fine and it's about gradually increasing to achieve max therapeutic level. She is on the max dose for her.

  • Hi I'm taking 1.5grammes twice a day, so 3 grammes a day. I've had no side effects but I've taken this for my lungs for the last 2 years. It has been amazing for me and finally my lung function has improved. They are looking to refuce my dose to 1 gramme twice a day, so 2 grammes a day. My bloods are monitored every 4 weeks on the Azithioprene protocol.

    Good luck, this drug wasn't available on my first diagnosis.

  • i've increased with no ill effects

  • I have to take two 500mgs in the morning and two 500mgs in the evening.....side effects are something that may be different for each of us if at we get any side effects at all. Hopefully, we may not experience anything at all! Good luck and hopefully all will be well with your increased doseage.

  • I also take 2000mg a day, I found that I had a definite benefit after being on the drug for 6 months, no real side effects! Good luck I am sure you won't regret it. Just make sure you are monitored.

  • Hello everyone, and thank you so much for replying. This is all very positive and has reassured me. I am having 2 weekly blood tests so will be monitored. Thank you all again and I hope you all continues to do well on the drug.