Tacrolimus side effects - nausea

[PositivelyLupus]

Hi everyone, I started Tacrolimus (Oral) Prograf last week to help tackle my nephritis. Just wondering what side effect people found and if they carry on for the whole time or if it settles down?

I'm suffering from bad nausea especially after taking my morning dose (I think because my stomach is completely empty for 12 hours) But I still get waves of nausea throughout the day. I just wanted to know if this nausea will settle or if it carries on throughout?

I also get a hot feeling in my fingers and cheeks, I mostly feel it in the evening not sure why. And noticed blood spots in my left arm after a few days of starting it, just small ones and only like 6 spots - haven't had any more since.

Does anyone else get these symptoms?

Thank you in advance! xxx

[FlowerdownAnnC]

Hi I took tacrolimus a good few years ago now- maybe 20years . To be honest I had a noticeable tremor and diarrhoea most of the time I took it ( about 4 years). However those side effects were nothing compared to active lupus. I was more than happy to cope with the side effects as it gave me my life back!

It worked quickly from what I remember I’d tried other immunosuppressive drugs prior to the Tacrolimus with minimal effects on the disease activity. I stopped taking it as I seemed to be stable & wanted to try to get pregnant ( I was 40 at the time & the clock was ticking!) however after only a few months I had a massive flare. I decided against a pregnancy.

When I was reviewed my own rheumatologist was on long term sick leave & another rheumatologist suggested methotrexate which I tried & it worked. ( not as quickly as tacrolimus and with unpleasant side effects for about 12-18 months) I’ve now been stable on methotrexate for about 14 years.

If I was to be in the same situation again I would go for the tacrolimus without hesitation. Good luck - let us know how you get on