Experience with Tacrolimus with or without Azathioprine

[Sandy1212]

Hi all!

My drs are suggesting to put me on tacrolimus alongside AZA to help with my joint pain.

Has anyone been on tacrolimus? With or without AZA or another immunosuppressant? How is your experience?

Anyone have any knowledge/experience of long-term tacrolimus?

Also, I got told by the nurse the tacrolimus is safe to get pregnant on but then read that it should be avoided? (Im not planning on being pregnant anytime soon, it’s just for my own knowledge)

[SonyaNME]

I was on MMF for a long time, I had side effects of digestive issues & migraines with different brands but was ok with the Cellcept which isn’t safe for pregnancy so I was switched to AZA. It made me really sick with severe vomiting & diarrhea & I couldn’t tolerate it at any dose, it’s a rare reaction but does happen so I was switched to tacrolimus, it’s not used as frequently so a lot of people aren’t aware it can be used, I am currently still on it & fully breast feeding my healthy 7 month old daughter. I initially had some digestive issues with tacrolimus but it settled after a few months, they monitor the concentration of it in your blood & adjust if needed. When I had my daughter & lost weight o started to get a lot of migraines, dizziness & visual problems. I did some research myself & seems some people get neuro issue with tacrolimus so the doctor lowered the dose slightly & now I’m fine on it again.

[Sandy1212 in reply to SonyaNME]

Thanks for posting sonyaNME! Congratulations on your daughter im so happy for you! Your experience has been reassuring, thanks again and wishing you the best xxx

[Sarahjj87]

I was on MMF and tacralimus together and managed fine. Due to wanting to get pregnant I had to stop both MMF and tacralimus x x

[Sandy1212 in reply to Sarahjj87]

Thanks sarahjj87! glad to know you had a nice experience with it. What did they put you on instead? Xx

[Sarahjj87 in reply to Sandy1212]

I would of normally be put on AZA but I had possible Steven Johnson syndrome to AZA. So put me on a small dose of steroids and luckily my lupus stayed under control.If or when you do want to plan a pregnancy ask your rheumatologist they sent me to a combined clinic which was brilliant xx

[Sandy1212 in reply to Sarahjj87]

Thanks so much for the information! Nice to know there are a few options😊 all the best xx