What is your average tacrolimus level? Hoping to reduce side effects

Hi, @nat1742, and Welcome to Connect! I see that you have shared information about your trough level for tacrolimus and I am wondering whether you have a question about it, or are having side effects. If you are comfortable, woud you share a little about your heart transplant experience? What brings you to Connect?

My question is i would like to see other heart transplant patients blood level on tacrolimus and how long from transplant. I am getting tired of headaches, sore muscles and joints. My experience with a heart transplant is medically i can not enjoy the wonderful gift I was granted.

@s7r3welty, I'm tagging some heart transplant members to join this discussion like @danab @estrada53 @scottij @glinda @bellini @azdan99 @luckonetj @hope25 @msrlallen @jackiez. Perhaps they can share their average trough level on tacrolimus after transplant and how long after transplant they got to a place where symptoms were manageable.

Sounds good. Thanks

@s7r3welty
First congratulations on hitting five years with a reconditioned ticker. Well done. I just hit five years myself and my tac trough is stable between 7.4 and 7.8 (blood tests every three months now). While many people transition off of tac due to the side effects and potential kidney damage, my medical masters at Mayo believe I may be genetically inclined to tolerate tacrolimus. My dosage is 2.5 mg in the AM and 2 mg in the PM. That has been stable for the last three years. Kidney and liver numbers are outstanding.

I am not sure what side effects you are experiencing. I had the gamut from leeched cartilage in joints (two new artificial hips), hair thinning, and cramps that just did not quit. Magnesium supplements helped with the cramps. Surgery took care of the hips and while my gait is a bit gangly, I still play basketball and am averaging 34,000 steps per day. As for the hair, I go to Great Clips every three weeks now and get a close to the scalp buzz. I love how easy caring for my hair (such as it is) has become.

For me I embrace the side=effects. It is part of the new me and I wear them as a badge of honor.
Ping back if you can share more about your side effects.
Best always,
s!
Scott Jensen

Hi @s7r3welty Congratulations on your transplant, 5 years I just past 7 myself. I actually went thru a bad bought with a virus (not Covid) that took them 5 weeks of hospitalation to find. Ended up in my lungs only. Could not find it in the blood stream. But during that time they wanted to let my immune system help with that virus so the took me of one anti rejection drug started with an M I can't remember the name. And they also dropped my Tachromius as low as possible. At first they were nervous but I had not had any rejection issues so they dropped my trough to 5-7 and I'm at 1.5 twice a day to maintain that. This all happens like 5 years ago now and even tho I've had Covid and other bugs my Heart is happy at that level. So I know they used to like to keep it about 10 if I remember right. So is yours at 9.6? That sounds like the sweet spot they like. Now as for side effects. I have never been prone to headaches (except when I had Covid. That was the worst part) and as for joint pain and muscle aches I do seem to getore soar with a good workout but nothing to severe. I am 65 now so I figure some of it is normal aging. I still enjoy walking and moderate hiking, Golf and working around the house. As a former maintenance man I like to do simple things. So I guess what ever your taking now sounds about right. If it's really a bother maybe ask if there is another type that would work better.

Hi @s7r3welty and congratulations on 5 years! I am a heart double lung recipient and am approaching 4 years this April. I was on Tacro in the beginning and I believe my range was 7-9. I can’t remember my dosage. I had many symptoms like the Tacro tremors (improved as I got stronger), hair loss (wore hats and got a wig for nights out), high BP (was put on BP meds) and lost weight -bonus!! Then a couple years ago I was transitioned to Sirolimus and off Tacro-better on my heart and kidneys, per my Mayo docs.
But some recent lung issues caused my Mayo docs to put me back on Tacro, but just 0.5mg per day and a somewhat lower range, since I’m also still on Sirolimus.
Got all my old Tacro side effects back including some headaches this time. But have adjusted to be back on BP meds, doing more strength training and hair loss isn’t as much this time.
I say ‘pick your poison’ as all these meds have good things (fight off rejection, infection) and bad things. It is what it is.
Have you talked with your Transplant Coordinator about your side effects and if there are any alternatives for you?

I had a heart transplant 22 years ago at UMC in Tucson, AZ. My current dose of tacrolimus is 0.5mg twice a day. I am dedicated to taking my meds on a consistent schedule - 9 am and 9 pm.
My tacrolimus trough is consistently 5.5 to 7. I have not had any issues with tacro.

Excellent and very helpful article!

I have never been able to do 34,000 steps a day. I am lucky to get 3-5,000 steps a day since being switched to tacrolimus. I was at 10,000 - 15,000 steps a day on cyclosporine. I don't know why they want my tacrolimus level that high. I have never been in rejection. When they started me out I was at 5.6 and felt good. They kept telling at 5yrs. the meds would be tailored back.