Pancreas
Tac levels
Updated May 21, 2021
in Pancreas
What are your reco and optional tac levels? I am supposed to be above 6, and less than 10, w my two organs - if I did not have the pancreas I would be able to go down to 4 easily.
Over the past week I have had classic high tac side effects such as headache, nausea and a foggy mind - I even threw up a few times. I think what triggered the higher levels was food poisoning from my first dinner out in a year!!! Gave me diarrhea and the tac levels increased I am sure...
I wish there were an at hone test so one could self regulate / I actually decreased my dose by 33 percent after the third day w terrible headache and nausea but maybe not reco to do without bloods!!
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Hello so I am new to this. But my tac levels vary but normally 7-10 And i feel fine no side effects guess i am lucky 🤔?
Transplant Patient
That is great!!!
@Karin Good you raised this ... Tac levels and Tac dosage are a matter of concern as always ... and a tightrope walk even for the transplant doctors as well ... there are guidelines that advise analysis of variation in Tac levels (standard deviation) as higher deviation is not liked by the doctors ...
but you are right that an at home test would take so much worry off our minds.
Transplant Patient
My ideal is between 8 and 12. They’ve struggled with me because if I get 2mg I go too high but 1.5 and I go too low. I need like a 1.75mg pill!
usually I know now and can adjust my own dose just by how I’m feeling, but I’ve been calling my coordinator just to double check and then taking bets on how often I’m right (I’m always right)
I’m not sure they have ever told me what mine should be but last week I Was at 7.3 and they lowered my dose again with repeat labs in 2 weeks?
My ideal tac level is between 5 and 8. I usually only have side affects if it’s running on the higher side.
The tac level they have me at is between 7-9. This time last year, I jumped up to a 25.7 tac level which was crazy because the week before I was at a 9.6. All my other numbers were good, but they think it was the Hep C medications I was on (that is another story). Overall, I have been in the range with monthly labs. For those that have gotten one or two doses of the Covid vaccine, have you seen a decrease or increase in your Tac level?
Transplant Patient
My tac levels have been all over the place - so my doctors are currently switching me to slow release tac. Advagraf? Anybody have experience with this? I’m hopeful it will help with some of my tac related symptoms
My doctor likes me in the 6-8 range... recently I've been randomly dipping to 3-4 without any explanation (no changes in dosage, how/when i'm taking it, etc) - my liver numbers remain stable though, so they aren't too concerned about it.
@AliEm14 I'm on Envarsus (the other extended release version of tacro) and it's been going well for me! definitely noticed a decrease in tremors from taking regular tacro.
My doctors want me between 10-15! I've been in a roller coaster all year because of severe anemia an unexplained blood loss (gyno issues being looked at), but now I'm around 8 amd they seem to be happy with that. For most of the year I've been taking 4mg bid, now I'm down to 2, much more tolerable symptom wise!
Transplant Patient
@meghansmith oh good! I’d love to get rid of some of these tacro tremors
There is no straight answer, we know from other patients - many of them are on much lower dose of 1 mg Advagraf after 1 year of a liver transplant, but in our case, the dosage is high 3 mg.
We always make it a point to ask our doctor about the target Tac level they want to maintain. In India the lab reports also print the ranges for organ types, age and gender.
But the tac levels and tac dosage is also not a straight relationship ... for some patients, Tac dosage is kept high , this we are told is because of the autoimmune problem that started the liver cirrhosis in the first place. you get a new liver, but the underlying condition stays the same.
so I think it is always helpful to talk your care team and ask them all the doubts. questions and keep a good record of your levels. Too much fluctuation in Tac level without corresponding changes in Tac dosage is not good.
Transplant Patient
Hi @Anita - you seem really educated on this topic! Have you studied it w your team or are your working in the healthcare industry?
Transplant Patient
FK / Tac levels are unique to each individual. The post Tx/medical team sets the target levels, which can fluctuate based on several factors. The range for me at present is, 6-8 ( I'm almost 6 years post Heart Tx, daily Prograf dosage is 0.5 mg x 2). Thanks!
Transplant Patient
@Sdey0522 yes but the different organs do determine the level and the time you have been post op...
I have spent almost 10 years as a care giver /care planner fighting with liver cirrhosis and then managing the post transplant blues. Its a long and tough journey, so have made it a practice to read and discuss.
My doctors used to keep me around 6 to 8. About 10 years ago when I changed my diet my tac levels shot up to 15. I was so sick. Vomiting, dizziness, headache and extreme fatigue. It was rough. Now my body does not like tac. The doctors have lowered my levels to 3 and I now have a monthly infusion treatment to make up for the tac levels.