Mycophenalate : Hi is anyone on mycophenalate for... - LUPUS UK

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Mycophenalate

Sara_A profile image
5 Replies

Hi is anyone on mycophenalate for lupus? If so what dose?

I started on 500mg once a day and now I'm on 500mg twice daily. Is this the max dose for lupus or can it go higher? I felt good initially but as I've posted too, my wrist is really bad at the mo so had to up my steroids.

Thanks

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Sara_A
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5 Replies
Barnclown profile image
Barnclown

Yes, in treating lupus, Mycophenolate Cellcept daily dose can go higher than 1000mg per day

My therapeutic daily dose has been 1000mg daily (500mg a.m. & 500mg p.m.) for several years as part of a daily combined therapy treatment plan including hydroxy 400mg + prednisolone 5mg (increasing up to 10mg during my typical flares) + amitriptyline 20mg. My lupus clinic tells me a daily dose of 1000mg myco is a "moderate" dose.

Originally, I'd been expected to need 2000mg myco daily, but I responded so well to 1000mg that we left the dose at that. I know other lupus patients on 3000mg myco daily. My treatment plan meds are reviewed regularly with a view to making adjustments to doses as necessary.

Am sure you'll get many good replies

Hope your wrist improves soon

🍀🍀🍀🍀 coco

tiredmum profile image
tiredmum

Hi there, I take 1000 of a morning and 1500 of an evening. I also take 400 mg of hydroxy and 10 mg of prednisolone. I have been on this for a number of years now and it seems to be helping.

1sam profile image
1sam

Hi dear. I guess it depends on your response to the medication... last year I started taking 3 tablets of 500mg daily. Now I'm just taking 2 but my rheumy says she ussually gives just 1.

Good luck!

abby1649 profile image
abby1649

I take 1000 mg daily of the Myco. 2 - 500mg tabs in the morning. See my Rheumy in October and hope to reduce or get off this drug then. Also take Hydroxy 200 mg in the morning. I also take a blood thinner 20mg Xarelto as my Lupus throws clots. I was diagnosed in August 2013 and am stable now. Have not had a flare yet and hope never too. My Rheumy calls me his poster child for how the meds are supposed to work. I still tire easily by mid afternoon and some stiffness and pain in the morning but all very manageable.

Wendy39 profile image
Wendy39

Hello. I'm on 3g a day. So 6 x 500mg a day. I take 3 tablets in the morning and 3 in the evening. I've been on MMF since last July. I built up from 1g a day to 3g over about 5 weeks. I wasn't well at all and was so relieved I was offered another drug to try to control my symptoms. I seem to tolerate it very well. It's has certainly helped me, just took a few months for me to be able to see it. It generally seems to have good reports. I also take 2 x 200mg of Hydroxychloroquine a day and have now started mepacrine too. If you have any other questions, please ask. Happy to help. Wendy

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