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Experience with steroid-resistant rejection?

Posted by byaroch @byaroch, Feb 16 6:52am

Hello everyone, I would like to get some input and see if anyone has had any experience dealing with rejection and not seeing improvement with steroid treatment.

I am about 7 months out from a deceased donor liver transplant and have been tapered off all my meds except for everolimus. About 3 months ago now, my ALT started to slowly rise (was sitting around mid 40's and is now at 100). The team started me on 10mg oral pred daily for the past month which didn't improve the enzymes. I had a biopsy last week which confirmed mild acute cellular rejection, so the standard 3 doses of 1000mg solumedrol were administered. The last infusion was 2 days ago and my labs today showed that my ALT has climbed to 100. My team has me getting labs again next week and a repeat biopsy.

Has anyone had experience with something like this? My understanding is that the high steroid dose works most of the time and I don't really know what comes next if this doesn't work.

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beracha | @beracha | Feb 17 4:21am

On my first liver transplant I rejected in hospital. Increase tacrilomus. Rejected again at 25 yrs post and took high dose tacrolimus again. Since my transplant I have not been on anything but tacrolimus.

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beracha | @beracha | Feb 21 8:14am

Hi, I am over 30 years out from my transplant. I rejected 3 weeks post transplant. I know prednisone is very hard on liver. I started in 1990 on Tacrolimus and rejected at 25 yrs. Increased Tacrolimus dose for a while. Numbers came down. Everyone is different. I know I was offered 2nd immunosuppression drug but my team at Pittsburgh said Tacrolimus is used for rejection. I chose to stay on Tacrolimus and not add 2nd drug. Too many side effects. Glad you are taking charge of your own health by joining group. Praying that you will overcome.

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1 reply
byaroch | @byaroch | Feb 21 10:08am
In reply to @beracha "Hi, I am over 30 years out from my transplant. I rejected 3 weeks post transplant...." + (show)
@beracha

Hi, I am over 30 years out from my transplant. I rejected 3 weeks post transplant. I know prednisone is very hard on liver. I started in 1990 on Tacrolimus and rejected at 25 yrs. Increased Tacrolimus dose for a while. Numbers came down. Everyone is different. I know I was offered 2nd immunosuppression drug but my team at Pittsburgh said Tacrolimus is used for rejection. I chose to stay on Tacrolimus and not add 2nd drug. Too many side effects. Glad you are taking charge of your own health by joining group. Praying that you will overcome.

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Thank you so much for the input! They are starting me on another course of IV pred now and may be adjusting my everolimus dose. The next step is antithymocyte globulin, hoping it doesn’t get there

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1 reply
beracha | @beracha | Feb 21 11:23am
In reply to @byaroch "Thank you so much for the input! They are starting me on another course of IV..." + (show)
@byaroch

Thank you so much for the input! They are starting me on another course of IV pred now and may be adjusting my everolimus dose. The next step is antithymocyte globulin, hoping it doesn’t get there

Jump to this post

Great attitude and plan.

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beracha | @beracha | Mar 18 12:31pm

Hi. Congrats on your transplant. After rejection in first 2 months while still hospitalized, they raised my tacrolimus levels. Taper off a few years later. Had major rejection at 25 years post transplant. They upped tacrolimus to high levels for two or 3 yrs. Levels went so high so had tapered back to low dose. I am 8 years past that. I know my team was able to offer me other meds, without steroids, like Everlimus ( sorry if misspelled). I am from original clinical trial for Tacrolimus so I am used to it. If you are still unsure, talk to your transplant team again. If not happy, pls get 2nd opinion. My numbers were still in range when I rejected but got worse. labs don't always tell whole picture. Wishing u the best....

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