New medication

[ManchesterUnited_]

Hi everyone.

I’m due to start a new medication soon called Tacrolimus. Just wondering if anyone else is taking this and if so do you have any information/advice. Thanks

[Barbara17]

Hello. I’ve used tacrolimus ointment for scle on my face as I think it is a bit more gentle than dermovate. I didn’t have any adverse effects from it.

[blessing40]

I am starting it today, I will give you feed back in due time. The rheumatology tried most medication with me but nothing has worked. He recommended this one so I am hoping for the best and praying that it works.

[ManchesterUnited_ in reply to blessing40]

Hi, thank you for the reply. Hope it works for you. I’ve also tried a couple of new tablets in the last months and had bad reactions to them so fingers crossed it’s third time lucky x

[blessing40 in reply to ManchesterUnited_]

Yes, fingers crossed, let's hope for the best. Good luck.

[NewEngland3]

Yes--on it for lupus nephritis class 5/membranous nephropathy---they first tried cellcept but failed that--didnt help at all for kidneys nor general lupus symptoms--so they added tacrolimus--first 1mg and now at 2mg bid it seems to be helping...only side effect possible hair loss. please make sure you get levels of tacrolimus regularly as can damage kidneys--very powerful med but for me thankfully working.

what are you taking it for?

[ManchesterUnited_ in reply to NewEngland3]

Hi, thanks for the reply. I will be starting it for my lupus soon.

[FlowerdownAnnC]

Hi I Have lupus & took tacrolimus years ago. It worked well & I went into “remission.” I’d had other immunosuppressant drugs with little effect on the disease & adverse effects on my white count & renal function . This was 17/18 years ago so my memory is a hazy but I recall it started to have positive effects in a short time. I do remember having diarrhoea and a tremor throughout the 3/4 years I took it but this was far preferable to the active lupus. I came off this drug to get pregnant but within months the lupus became very active and I needed to go back on immunosuppressants My own rheumatologist was on leave when I was reviewed and the locum suggested methotrexate which Ive done very well on and 14 years later I’m still taking it.

However, if I were to be in the same situation again & tacrolimus was my option I would take it again as the effect on the lupus was very positive. It meant I could go back to work & have a life.

Good luck I hope this works as well for you as it did for me.

[ManchesterUnited_ in reply to FlowerdownAnnC]

Hi thank you for the reply. My lupus has been out Of control for about a year and a half now. Tried 2 different tablets and they haven’t agreed with me. I had a bad reaction to methotrexate a couple of weeks ago so that’s a no go. Spoke to my consultant on the phone this week and he recommended starting Tacrolimus so I’ll be doing that in the next week or so. Thank you for the help

[harmony2 in reply to ManchesterUnited_]

I don’t use this medication but I am writing just to express some empathy since these medication attempts are so wearying! Praying for strength and perseverance for you.

[NewEngland3]

what kind of symptoms do you have?

[ManchesterUnited_ in reply to NewEngland3]

Mostly joint pain

[patient165]

Hi I've been on it for over 2 years. I was worried about the looong list of side effects but it's worked really well as I was able to slowly reduce my prednisolone dosage. The only issue is let's say "loose stools" so I tend to keep some immodium nearby! That said, stress is my main flare trigger and I've had a really stressful year (busy full time job, mum in and out of hospital, building site for a house) but flare free so the positives far outweigh the negative. Good Luck!

[Chelsey1999]

Hello! I started taking tarcolimus in February, I started on 1mg bd and am now up to 2mg (they tweak the medication over time so that the levels in your body are safe) I think it’s a wonder drug! I was originally taking steroids for my kidney disease however I didn’t respond to treatment, but when combined with the tarcolimus my kidney function has returned to normal, albumin, protein etc all at normal levels which is great.

Only problem I have experienced is hair thinning, I used to have such thick, long hair and now I have barely anything left, but in the grand scheme of things there’s nothing more important than health is there ☺️

I wish you the best of luck with the tacs!

[Chelsey1999 in reply to Chelsey1999]

Also- tarcolimus works by suppressing the immune system- generally to stop a transplanted organ from rejecting! So you’ll be pretty vulnerable, I’m classed as a ‘high risk’ because of these meds, so make sure to be extra careful when going out and about! ☺️

[blessing40]

Hie, I have started Tacrolimus last week, and this is my second week, it's making me very sleepy and also feeling hot after taking. I had a bad flare but now, I feel so much better after taking it. My dose is 2mg, 1 in the morning and 1 in the evening. It's either 1hr before food or 2 hrs after food. Hope that helps. Good luck.