What did you experience when cutting down Tacrolimus?

I read of some non-human studies where stem cells from donor were injected into recepient several months before transplant. Sometime might be sooner than later.

I have twins, different sexes, blood types completle different. How can a mother not have a rejection? I know they don’t but what is it that is different in a transplant?

I only cut down the Tacrolimus to 0.5mg in am and in pm, with the doctor's permission at the transplant center. I have to clear all with them first. I experience less hand shaking and body shaking, and voice trembling. It also causes less anxiety during the day. I just overall feel better. Take care, BB

Hi,

I started at 1mg twice a day, went up to 6mg twice a day and just got it cut back to 5mg twice a day. No side effects at all. The prednisone was messing with my sleep but just finally got tapered down to 5mg a day so that should stop.

Best of luck to you and hope the side effects go away.

Do any of you get the Evusheld shot to increase COVID antibodies? My transplant center has not said anything about this. I am very scared of getting anything: COVID, a cold, flu. I am 7 weeks post transplant. I will have to ask the Transplant Center what over the counter meds I can have on hand to take if I get sick. I am still not driving so order everything from Amazon. I wish the best to you all at these holidays. BB

Hi @blbird33 😊
In addition to your reduced Tacronlimis dosage, what additional immune suppression meds do you take?
Thank you for sharing your experience!

@blbird33,
Since you are newly transplanted, I don't know what the protocol is for Evusheld. This is a good question to discuss with them. When is your next appointment?

Evusheld is discussed in this discussion.
- Evusheld Update
https://connect.mayoclinic.org/discussion/evusheld-update/
I am scheduled for my 2nd Evusheld on Dec. 22.

I take Myfortic 720mg twice a day, Prednisone 5mg once a day. That is in addition to the Tacrolimus 0.5mg twice a day. PLus prilosec, dapsone and clortrimazole. This is with the doctor's guidance. Take care, BB

My next appt is Jan 6. But I can call the Nurse coordinator at the TC with any questions and she contacts the doctor. Not sure why the TC does not openly talk about prevention care, or care for colds and flu and COVID if I happen to get these, or Evusheld. Take care, BB

Thanks for all the great information @blbird33 😊 At such a low dosage of Tacronlimis, do you need to take blood tests to stay in a certain target blood range? I take 6mg of Envarsus every morning to maintain a Tacronlimis blood target between 6 and 8. I am curious if you also have a Tacronlimis target blood range?

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