What did you experience when cutting down Tacrolimus?

I did not know this, I will want to discuss this w/my Dr and see about taking a supplement of magnesium. Ty.
My tac level is usually 2.-2.5 .

@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

Ty so much for your help. I am going to check my magnesium number b/c I get blood work once a month.
How come u don’t have to take tac anymore. I hope I can stop to.😊💚

Hi @myfablife, I had a bone marrow transplant. That gave me a new immune system. Unlike a solid organ transplant where you have to take an anti-inflammatory med like Tacrolimus to avoid rejection of the organ, my new immune system wants to reject my body, because it’s foreign to the immune system.
Over the course of 2.5 years, my new immune system and body learned to play well together, so that I no longer need to take the Tacro. 🙂With a solid organ transplant your immune system will most likely always want to reject that foreign organ. So I’m not sure if you’ll be able to go off the tacro in the future or not.
Though, this past year, I was sitting in the waiting room of a med center for my turn with bloodwork. The man next to me had a liver transplant 15 years ago and I was shocked to learn he wasn’t on any meds any longer! So it can happen. Good luck!

Congrats to u , so glad u r doing well. I have been told I would have to take meds the rest of my life “yuk” but I find it very interesting on that gentleman not taking anything, I would love to be able to do that.
Maybe one day it will happen😊

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.

Hi,
Yes totally agree w/diet and exercise has been my big one to. My creatinine 1.3-1.5 w/GFR of 39.
Just part of being given that second chance at life😊💚 almost 2yrs.LT
I am glad u r doing so well.

I am 5 months past full liver transplant and my tac has dropped from 2 mg morning and 2 mg at night. My doctor has adjusted my meds twice and now I am 1 mg in morning and .5 mg at night.
I had noghtly leg and foot cramps, tremors and piecemealed sleep. The lower tac reducex cramps and tremors. For sleep I use lorazepam (not every night). One of my local doctors prescribed it for anxiety as I started my Mayo journey and I found no need for it during my 6 month Mato process testing, ERCPs, radiation, chemo, laporotomy and transplant. However when I was sleeping restlessly in 1 to 2 hour pieces at a time I decided to use the lorazepam as sleeping aid in lieu of melatonin which didn't help.
Now I sleep in 4-5 hour blocks so I get a total of 8 to 10 hours of sleep with just 1 mid night pee break. I keep lorazepam to 1 pill for each of 3 nights per week. I don't want my body or mind dependent on lorazepam.
With all changes in meds I check first with my Mayo doctor through my TP Coordinator evertime.
Hope this helps, Barbara

I've cut down 1mg Tacrolimus since Sep, but I haven't known if it is successful. I felt uncomfortable in the area of my liver when I started to cut down 0.5mg. It wasn't pain. It's uncomfortable inside. It's hard to describe. I'll update my situation.

I was shaking in my body and voice and 1mg was too much. I am down to 0.5mg in am and one in pm and things seem a bit better. Plus labs are coming back up so I am stable for now. I am 7 weeks post transplant. Good luck and report your symptoms to your doctors. As they do not know what it is like for you unless you speak up. BB