Tacrolimus

[Melaxx]

Hi, anyone on here on this drug ? Does it work on lupus ? I was prescribed tacrolimus 1 mg today by my rheumatologist, I was wondering if it works and well tollerate .

Thank you 🙏😊

[NewEngland3]

I am on on it, for lupus nephritis that didnt respond to cellcept, still peeing protein, but less.

[Simply_Kea in reply to NewEngland3]

Sorry to jump on someone else’s post but you are literally the 1st person I have seen with the same diagnosis as me & I was wondering how long you have been diagnosed for?

[NewEngland3 in reply to Simply_Kea]

You can look me up under my other posts and read my sad lupus story. Currently Im on 4mg of tac and 2000mg of cellcept along with plaquenil and synthroid. Cellcept didnt help at all for lupus nephritis type 5( which is the membranous type) , tac has decreased protein leakage but still present. Going next week for f/up, they may increase it again. I developed late onset nephritis 20 years plus after diagnosis, which is ultra rare, especially for Caucasians. Not apologizing for being bitter.

[Simply_Kea in reply to NewEngland3]

I will definitely look you up & hopefully we can converse more as I am acc really struggling. I am unsure what the rest of your medications are. I have class 5 as well but so far its been managed very well, thank God x

It’s just refreshing to know I am not alone & well done for continuing to be a Lupus Warrior 💙

[Sarahjj87]

I am on tacrolimus and it did for me. Took a while to work but did stop my protein leakage. Did take me a while to get used to it and had to reduce the dose once due to stomach upset. Definitely worth a try fingers crossed it works for you too x

[Yazzmin]

Hello, I’m taking tacrolimus . It has worked for me. I’m currently taking 1mg twice a day, slight tremor in my hands but i feel it is working. I was diagnosed at age of 13. Hope you're okay.

[Simply_Kea]

Hey, I am on 5mg daily of this coupled with a few other drugs. I have Lupus Nephritis. Its hard to say personally if the drug works alone but I do know it stopped the protein leakage. Its a catch 22 (not sure what form of Lupus you have) but Tacrolimus does affect kidneys & after a while you do start having slight tremors, only slight as I didn’t notice them it was others around me.

Hope this helps & I hope you take to the drug x

[tdbsnoball]

What is it? Ive never heard of that b4.

[NewEngland3]

Melaxx--what specific reason are you taking it for? nephritis? have you already been on cellcept?

[PositivelyLupus]

Hi,

I've been on Tacrolimus since July 2020 after failed Rituximab (I had a anaphylaxis reaction) and Mycophenolate wasn't budging my nephritis. Tacrolimus was added as an add on to my current combination of MMF, Prednisone, Hydroxychloroquine.

So far it has worked really well for me, so well that my doctors have said I'm in remission (I've had active lupus for 10 years now). I'm still leaking protein around 2g so it's not low but it's acceptable they said?

I was diagnosed with Nephritis in 2018 after having my baby. SLE was diagnosed in 2011.

side effects for me of Tacrolimus was: Nausea, diarrhoea, stomach pain. Most of it has settled or very mild compared to the first few months of taking it. Drinking tea after you take it helps me a lot!

I have a personal blog where I've written about all my experiences with Lupus so far if you'd like to read more:

positivelylupus.com

Hope that helps! Happy to chat if you need x