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I’ve had a major setback due to Tacrolimus has anyone ever experienced

Posted by zimbro @zimbro, Aug 11 9:19am

I ran 102 fever and within hours I couldn’t walk? After 3 days in the hospital and a few days in rehab wasn’t much better. They haven’t really came up with a label what caused this. They are leaning towards Tacrolimus but nothing has been determined yet. I’m 6 weeks out from the hospital stay I can walk with a walker and make a few steps without it now. The mentioned PRESSaacould be the issue but no concrete answers. Has anyone experienced there symptoms before?

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Rosemary, Volunteer Mentor | @rosemarya | Aug 11 1:21pm

@zimbro, First, I want to say that I am happy to read that you are making progress with your ability to walk a few steps without the aid of the walker. I hope that progress, even though slow, will continue for you.

I have not heard of anyone expressing a similar experience as you have described in the transplant discussions here on Connect. Are you a transplant recipient or do you take tacrolimus for a different condition?

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zimbro | @zimbro | Aug 12 8:53am
In reply to @rosemarya "@zimbro, First, I want to say that I am happy to read that you are making..." + (show)
Profile picture for Rosemary, Volunteer Mentor @rosemarya

@zimbro, First, I want to say that I am happy to read that you are making progress with your ability to walk a few steps without the aid of the walker. I hope that progress, even though slow, will continue for you.

I have not heard of anyone expressing a similar experience as you have described in the transplant discussions here on Connect. Are you a transplant recipient or do you take tacrolimus for a different condition?

Jump to this post

I’m a transplant recipient 2 1/2 years ago. Been taking Tac from the begging with minimal side effects. Then when I got sick with high fever something happened but they haven’t really determined what. Doing some googling I discovered PRES is a bad side effect from Tac. I have an appointment with my Nephrologist in Sept maybe he’ll have some answers by then.

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heidi15 | @heidi15 | Aug 12 12:16pm

That's so scary, zimbro. I'm happy to hear you're recovering. Good luck - sending good thoughts...

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38626sunny | @38626sunny | Aug 13 2:47am

I'm sorry that you are going through this. I'm not familiar with PRES. I should Google. I was on tacrolimis post BMT for AML until 8mo. ago. No side effects, but I did developed GVHD in liver after Dr. discontinued tacrolumis. I now have excessive ferritin level 4000.

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l0lag0lag0b3 | @l0lag0lag0b3 | Aug 14 4:49am
In reply to @zimbro "I’m a transplant recipient 2 1/2 years ago. Been taking Tac from the begging with minimal..." + (show)
Profile picture for zimbro @zimbro

I’m a transplant recipient 2 1/2 years ago. Been taking Tac from the begging with minimal side effects. Then when I got sick with high fever something happened but they haven’t really determined what. Doing some googling I discovered PRES is a bad side effect from Tac. I have an appointment with my Nephrologist in Sept maybe he’ll have some answers by then.

Jump to this post

Hello Zimbro
Can you share how much tacrolimus is prescribed & approx trough levels
bw: How is your kidney GFR doing
Thanks & wishing you the very best
Regards

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l0lag0lag0b3 | @l0lag0lag0b3 | Aug 14 7:56am
In reply to @l0lag0lag0b3 "Hello Zimbro Can you share how much tacrolimus is prescribed & approx trough levels bw: How..." + (show)
Profile picture for l0lag0lag0b3 @l0lag0lag0b3

Hello Zimbro
Can you share how much tacrolimus is prescribed & approx trough levels
bw: How is your kidney GFR doing
Thanks & wishing you the very best
Regards

Jump to this post

btw: I am a kidney transplant recipient ... completed 6 yrs this July.

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zimbro | @zimbro | Aug 15 11:21am

They took me off Tacro now I was at 180 mg twice a day. I my trough was around 4-5. Put me on cyclosporine now 125 mg a day I’m at 95

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zimbro | @zimbro | Aug 15 11:21am

GFR is 95 all labs aregood

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