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

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

Tacrolimus can be toxic to the kidneys. My cardiologist switched Tac to Imuran in hopes of stabilizing the kidneys. Hear transplant in June, 2013.

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@dflyfisherman

Tacrolimus can be toxic to the kidneys. My cardiologist switched Tac to Imuran in hopes of stabilizing the kidneys. Hear transplant in June, 2013.

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Hello @dflyfisherman and welcome to Mayo Clinic Connect. Thank you for joining the discussion and sharing your experience to help support other members.

Can you share what you were looking for when you found Connect?

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When I found Connect, I was looking for info on the interaction of anti-rejection drugs solid organ transplant patients must take on Covid-19 vaccines. For example Johns Hopkins did a study that showed about half those with organ transplants showed no response to the Covid-19 vaccines. That is there was no antibody response.

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@dflyfisherman

When I found Connect, I was looking for info on the interaction of anti-rejection drugs solid organ transplant patients must take on Covid-19 vaccines. For example Johns Hopkins did a study that showed about half those with organ transplants showed no response to the Covid-19 vaccines. That is there was no antibody response.

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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/

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@dflyfisherman

When I found Connect, I was looking for info on the interaction of anti-rejection drugs solid organ transplant patients must take on Covid-19 vaccines. For example Johns Hopkins did a study that showed about half those with organ transplants showed no response to the Covid-19 vaccines. That is there was no antibody response.

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@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

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@colleenyoung

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/

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

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@colleenyoung

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/

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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

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@azdan99

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

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@azdan99 Thanks for sharing that.

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@nanmargaret

@azdan99 Thanks for sharing that.

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

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@azdan99

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

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@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

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