mycophenolate

[Mandypandy1969]

has anyone had mycophenolate suggested as a medication after a course of steroids to do with immflamation/sjogrens disease. x

[desquinn Partner Volunteer FMAUK Trustee]

have a look at - arthritisresearchuk.org/art...

[Mandypandy1969 in reply to desquinn]

will do. thankyou. xx

[feistyfibro74]

Yes i was prescribed for Lupus for some years.

[Mandypandy1969 in reply to feistyfibro74]

my rheumatologist diagnosed me with lupus for a start and was given hydroxychloroquine after a month of steroids. steroids were amazing but hydro made me feel worse. I don't get rashes but intense sensitivity to smells, noise and light/sunlight. I pressure very easily and moods up and down like a yoyo. I can hardly do anything as my body soon aches and feel like jelly/lead weighted arms and legs. list goes on. I have a lot of soreness on my back and sometimes my face, feels a bit like sunburn. sorry for ranting . I waffle a lot and words come out wrong. forgetful, clumsy and hands shake when I write anything down also making my wrist ache which I used to suffer with carpal tunnel. xxx

[feistyfibro74 in reply to Mandypandy1969]

I had very bad side effects with Methorextate and hydroxychloroquine. Only mycophenolate was not that bad.

[Mandypandy1969 in reply to feistyfibro74]

my mum is worried about avoiding the sunlight with them. I hate wearing clothes, definitely couldn't cover myself up, sweat so easily. don't wear long sleeves even in the winter. are you still in them? xx

[Sparkimoore]

Hi!

Yes, I was on Mycofenalate Mofetil 1g twice daily for 4 years together with steroids to control very severe difficult asthma. It was the ONLY med that controlled my severe asthma attacks!

Only thing was, it’s highly toxic, with loads of nasty side effects. When MEPOLIZUMAB injection became available last year, I was slowly weaned off the Mycofenalate but if it hadn’t been for that, I would not be here now, cos the steroids alone couldn’t control the severe asthma.

Give it a go.. it’s worth a try!..

Good luck!

Rose

[Mandypandy1969]

ok but I think he is thinking about putting me on it for either suspected inconclusive results for sjogrens. xx