Mycophenolate dose

[Bluemoon110]

I have had issues with Mycophenolate that was a concern to me. Discussed with my GP. Recent I saw my Consultant who reduced the dise by 50%.A week in and it’s made a positive difference to my physical health and reduction in side effects.However now I am taking 1 tablet a day when is the best time to take this tablet ( Mycophenolate 500mg ) or has anyone experience of taking 250 mg twice a day?

Happy the side effects are much less within I week of reducing the dose although I still know I have adverse effects.

I worry about taking this medication as no counselling before it started just a leaflet I was told it would stop in a year from start date which is in a weeks fine

Thank you all

[Spanielmadlady]

Hi bluemoon. I have taken mmf for 5 yrs now and I'm currently taking 2gms twice a day. I take mine in a morning with breakfast and in an evening. I struggled on 3gms a day with nausea etc and found spreading the doses out over the day helped but it since been reduced as I've had tacrolimus added in. SML x

[Bluemoon110 in reply to Spanielmadlady]

Thank you for your prompt reply..I have struggled with the higher dose . I may need to see how my blood tests are/outcome over the next few weeks and ask for a twice daily dose . I have found that depends upon which brand also makes a difference.

Thank you for your prompt reply. Happy Saturday.

[Spanielmadlady in reply to Bluemoon110]

Yes it does to me. I can't take the Accord brand of mmf it irritates my gut but I'm ok with Teva. I had a job to get it prescribed by brand and even now chemist still sneak in Accord every now and then.

[Bluemoon110 in reply to Spanielmadlady]

Hello again, I will see what the week ahead brings. I had MMF this pm and now I have back ache. However I now only feel subdued for half the time I used to on this drug for almost a year. I didn’t know that it was the side effects not the Lupus or the head injury effects!!

[Spanielmadlady in reply to Bluemoon110]

My side effects only lasted about a month.Maybe you just can't tolerate it and need to try something else .x

[Flick120]

I’ve been on 2gms twice daily for about 9 years. I do remember first starting and the first could have weeks were bit rough. I think I had the slightly slower does for a week, then added the rest. It was horrible for that first fortnight, but after that it settled as has controlled my lupus really well since then. Everyone is different and drugs react differently , but if you can persevere for a little bit, you might find it settles in not too long

Good luck and hope it gets better for you x

[Bluemoon110 in reply to Flick120]

Thank you so much. Maybe I am expecting too much. I will preserve. Some days I don’t know whether it’s the lupus , the meds or whatsoever is causing the issues. I am not sure how I am meant to be feeling Howe eg I don’t feel I have had information or support I would have given to my own patients.

Thank you all as I don’t feel so alone

[Tiggywoos in reply to Bluemoon110]

Please don’t feel alone there is always someone kind on this forum as you know who will have similar experiences they can share .

Sending you big hug and make sure you’re being kind to yourself as we aren’t very good at that I don’t think 😉 😘x

[Bluemoon110 in reply to Tiggywoos]

Much appreciated 😊

[Tiggywoos in reply to Bluemoon110]

😘