Transplant anti-rejection medications. What's your advice?

In reply to @jolinda

Thank you all for your comments regarding our meds we need to take. My transplant was October 2020. As of now I am on 6mg of
Tacrolimus in am and pm. I was on everolimus I think 6mg am n pm.
I was taken off zotress in middle of April do to horrible case of
Mouth soars, did not eat 23 days, only protein drinks, anyway
I had surgery in early June which is also why I stopped cause of
Healing. Thursday, my doctor wants to put me on sirolimus, once
A day, but it has same side effects that I am very nervous about.
I don't understand why I am taking so much tacrolimus! Other than
That feeling better from my hernia repair every day.... have a great day
God bless you all....

Covid

Not sure. I think he meant transplant patients in his care, not necessarily had vivid.

@azdan99 Just to clarify, did he mean in heart transplant patients that he's cared for who have had Covid19, that none have died? Thx

Actually, just to clarify, did he mean in heart transplant patients that he's cared for who have contracted Covid19, that none have died?

@azdan99 Thanks for sharing that.

I have been taking tacro and mycophenolate for my heart transplant antirejection for 18 years. I discussed with my cardiologist at the VA if i should be tested for antibodies and if i should get a booster. He investigated and has not received any guidance from either the CDC or VA on either subject. He basically said that there is no standard for what the antibody level should be after receiving the Covid19 vaccine. He will continue to monitor studies and will keep me informed of any changes. He is aware of the John's Hopkins study.
BTW He is a specialist in post transplant patient support. The good news may be that heart transplant patients have a less severe immune response to Covid19. He experienced no deaths of transplant patients due to Covid19

Thank you. My strategy will be to mask up and follow CDC guidelines (until further notice).

@dflyfisherman Holi D and welcome.to Connect. I'm in the same category as you when it comes to the Vaccine and while im a believer in Vaccines in general I think when it comes.to the Covid Vaccine we are learning all thee time. I have posed the question you mention to my Infectious Disease Doctor and yes it seems they are finding it's best to receive the vaccine prior to transplant but for most of us who had them.in the past it's true that it seems they are less effective.
Now the good news is along with vaccines there is ongoing studies in treatment.options also and my doctor mentioned a study looking very promising called Monoclonal Antibodies which if we catch it and treat it early.has shown great success. So as we all know when we received.our transplant that we would have to be more diligent in the protection area that's my general advice along with my doctors. Mask, wash hands and distance are still our best defense. That's what I've been told lately and not to say the vaccine has no protection just reduced. I've heard figures of 30 to 50 % effective. But im at. least very confident that our Mayo Doctors are working diligently to find options.
I hope that helps
Have an awesome Day
Dana

Flyfisherman, allow me to bring fellow heart transplant recipients @estrada53 @danab @scottj and @azdan99 into this discussion. They may have information about drug interactions to share with you.

You may also be interested in this related discussion:
- How much covid protection are transplant recipients really getting https://connect.mayoclinic.org/discussion/how-much-covid-protection-are-transplant-recipients-really-getting/