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What did you experience when cutting down Tacrolimus?

Posted by echo2022 @echo2022, Sep 28, 2022

I've taken Tacrolimus 1.5mg twice per day for 10 years and the drug level are usually about 4.2NG/ML. I think I take more Tacrolimus compared others.
I started to cut down 0.5mg from Sep. 10th. I take 1mg in the evening now. I took 1.5mg in the evening. My blood tests are normal when I took it on Sep. 19th. I'm waiting for the second tests on Oct. 3rd, but my sleeping is becoming worse lately, even very bad. I'm concerning if it is caused by cutting down the drug. What are your experiences when cutting down it?

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hello1234 | @hello1234 | Dec 11, 2022
In reply to @blbird33 "Yes, I get labs done now once a week and the numbers can not go below..." + (show)
@blbird33

Yes, I get labs done now once a week and the numbers can not go below 5. The docs monitor and will tell me if there is a change to the doseage based on the labs. The med at the high dose sped up my whole body, hands, voice, and caused great anxiety. And there is no treatment for the anxiety so far except camomille tea. My heart rate was sped up too and once measured 120, which is dangerous. I finally saw my cardiologist and she gave me a low dose of Metoprolol to take if the heart rate goes up regularly over 100. But it is lower now from 88-100 on a regular basis. BB

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Hi @blbird33 😊
I am happy to hear that your low dose of Metoprolol helped your heart rate so significantly. That's good news. Do you take your Tacronlimis with or without food? I take it with food and I think that is why I need such a high dose to reach a similar target blood level. How much time do you wait before eating? (Do you take your Myfortic at the same time?)

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blbird33 | @blbird33 | Dec 11, 2022

Actually, the abdominal breathing and time helped me lower the heart rate and the lower dose of Tacrolimus. I just have the med in case the rate stays above 100. I take all my meds with food. I eat some breakfast first and then in between each pill. Take care, BB

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yani2023 | @yani2023 | Dec 14, 2022

Hi I celebrated my 1 year kidney transplant. It was a challenging year as I ended Gavin’s three month hospitalization as a result of a diverticulitis’s infection. Ended up with stoma bag4 months of pt( I am fine now can climb stair) and have my strength back .. Tacrolimus dosage was 2 mg in am 1 mg at night .. loss all my hair .. .. it slowly gre back but totally curly and silver grey ( had jet black hair before transplant). On month eight post transplant hair grew back thick and wavy curly.. not happy but grate hair regrew again.. psychologically difficult but learned to be patient. Good luck to others going through same experience . Botin works but very slowly .. don’t give up! Hang in there 👍

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footballmum | @footballmum | Dec 28, 2022
In reply to @loribmt "@scottj has a good point about Tacrolimus depleting blood magnesium levels. Usually anyone on longterm Tacro..." + (show)
@loribmt

@scottj has a good point about Tacrolimus depleting blood magnesium levels. Usually anyone on longterm Tacro has their magnesium level checked as part of their routine CBC and liver panels. Check with your transplant team about taking magnesium and if you need to start a supplement, one that’s very easy on the stomach is Magnesium Glycinate.

It’s much kinder on the digestive tract and was approved by my transplant team pharmacist at Mayo. I’m no longer on Tacro but I still take the mag daily (at a lower level) because it’s also beneficial to prevent bone loss and helps with a number cellular functions with our bodies.

I found a fairly good article on WebMD regarding Magnesium Glycinate and its benefits. https://www.webmd.com/diet/health-benefits-magnesium-glycinate#1

Do you remember seeing magnesium levels in your bloodwork? It should be between 1.7 to 2.2 mg/dL

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Don't use WebMD. My Dr's have told me to stay away from that sight. They always suggest Transplant BC, The Canadian Liver Foundation or the Mayo Clinic sight.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 28, 2022

@yani2023, @footballmum - Welcome to Connect!

- Yani, Happy First Year Transplant Anniversary! It sounds like you have experienced a rugged first year, and I hope that the new year, 2023 will be a steady return to a more normal life for you.
I can understand how having a healthy head of hair is a boost to our self esteem because I, too, had the hair thinning experience during my pre liver/kidney transplant illness and post transplant period. Thankfully, that is now in my past history, and I have learned to live with and to celebrate my 'new' normal - healthy liver/kidney life. It was an adjustment at first with many small steps as my health and energy returned. I am now 13 years post transplant, and fortunate to be on stable course of medications and monitoring by my transplant team and my local PCP.
Yani, What do you most look forward to doing as you enter this new year with your new kidney?

- Footballmum - I see that you are new on Connect, and I would like to know more about you and your transplant experience. Are you a caregiver? Are you waiting? Are you a recipient? What brings you to Connect?

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1 reply
footballmum | @footballmum | Dec 28, 2022
In reply to @rosemarya "@yani2023, @footballmum - Welcome to Connect! - Yani, Happy First Year Transplant Anniversary! It sounds like..." + (show)
@rosemarya

@yani2023, @footballmum - Welcome to Connect!

- Yani, Happy First Year Transplant Anniversary! It sounds like you have experienced a rugged first year, and I hope that the new year, 2023 will be a steady return to a more normal life for you.
I can understand how having a healthy head of hair is a boost to our self esteem because I, too, had the hair thinning experience during my pre liver/kidney transplant illness and post transplant period. Thankfully, that is now in my past history, and I have learned to live with and to celebrate my 'new' normal - healthy liver/kidney life. It was an adjustment at first with many small steps as my health and energy returned. I am now 13 years post transplant, and fortunate to be on stable course of medications and monitoring by my transplant team and my local PCP.
Yani, What do you most look forward to doing as you enter this new year with your new kidney?

- Footballmum - I see that you are new on Connect, and I would like to know more about you and your transplant experience. Are you a caregiver? Are you waiting? Are you a recipient? What brings you to Connect?

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Good morning
I am a liver transplant recipient. My transplant date was October 11, 2020. I was on the list for 1 1/2 years. I suffered with PBC for 10 years.

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1 reply
echo2022 | @echo2022 | Dec 31, 2022
In reply to @scottij "Tacrolimus causes magnesium deficiency. If you are deficient in magnesium your nerves don't "fire" very well..." + (show)
@scottij

Tacrolimus causes magnesium deficiency. If you are deficient in magnesium your nerves don't "fire" very well and hence the cramping; most often in your extremities -- hands and feet. The supplements replace the lost magnesium and hence relieve cramping. Magnesium is also often used to help people sleep as it helps relax the muscles (a relaxed muscle does not cramp, right?).
Best always,
s!

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I got some magnesium supplements, but I haven't taken them. I'll try it. Thank you very much.

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silvergirl36 | @silvergirl36 | Jan 14, 2023
In reply to @footballmum "Good morning I am a liver transplant recipient. My transplant date was October 11, 2020. I..." + (show)
@footballmum

Good morning
I am a liver transplant recipient. My transplant date was October 11, 2020. I was on the list for 1 1/2 years. I suffered with PBC for 10 years.

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Congratulations on your transplant success. Can you tell me more about your journey. What did you experience when you were post-transplant in the hospital and the month after specifically. What side effects from medications did you have. Did you suffer memory loss, itching, GI trouble, etc.? Any advice you can give for the first weeks and months after transplant?

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footballmum | @footballmum | Jan 14, 2023

Good afternoon.
I experienced incredible anxiety from the Prednisone. I was actually suicidal. I've experienced multiple infections. A couple of bouts of sepsis that resulted in 10 day stays in hospital on IV antibiotics. 3 weeks post transplant I had a bile duct leak that resulted in emergency surgery. While in the recovery room I started bleeding internally and in turn had another emergency surgery. Post surgeries I had 3 incision site infections that required hospital care. Since then I've had a couple of skin infections and sepsis. Once I was taken off the Prednisone things got better. Currently I experience anxiety and sleeplessness. The last few weeks I've noticed an increase in bone pain. Apparently these are all side effects of tacrolimus. I have memory issues but that is left over from the hepatic encephalopathy that occurred because of my advanced stage of liver disease. My brain function did not return to normal after my transplant. I only take 2 prescription meds and a few vitamins.

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harrison221 | @harrison221 | Nov 15, 2023
In reply to @zorbanite "11 years out on my heart transplant. take 1.5mg of tacromilus per day. over the years..." + (show)
@zorbanite

11 years out on my heart transplant. take 1.5mg of tacromilus per day. over the years it has been lowered but stable for 3 years. I sleep ok, have occasional tremors in the hands, and suffer from low GFR (54) and high creatinine (1.4). take 400mg a day of magnesium which works well for me. My problems with high levels of tacromilus were nausea and headaches. I am told I am probably one of the lucky ones with very mild side effects from all the drugs, and actually have >25000 antibodies on a labcorp test against covid. My keys to success are diet, exercise, and a obsessive approach to making sure I get enough fluids and electrolytes each and every day.

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What type magnesium (brand) do you take?

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