1. < Transplants

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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 10, 2022
In reply to @saundrella "So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness?..." + (show)
@saundrella

So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness? Or does it abate or perhaps even go away once one may be weaned off the drug that caused it at some point? My mother never took any of the drugs you mentioned as she never received a transplant. Her neuropathy was caused by diabetes and she eventually ended up in a wheelchair due to no feeling in her feet. Is that the future with neuropathy as a side effect of an immunosuppressant drug that a transplant patient has to take for a lifetime?

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Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

REPLY
3 replies
JK | @contentandwell | Jan 10, 2022
In reply to @nimalw "Thank.you am.taking the same . I have been told there is a likely 4th Dose for..." + (show)
@nimalw

Thank.you am.taking the same . I have been told there is a likely 4th Dose for us Transplant recepiants

Jump to this post

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

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3 replies
estrada53 | @estrada53 | Jan 10, 2022
In reply to @contentandwell "@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the..." + (show)
@contentandwell

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

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Hi @contentandwell .. I'm in the same boat. Booster in February!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 10, 2022
In reply to @estrada53 "Hi @contentandwell .. I'm in the same boat. Booster in February!" + (show)
@estrada53

Hi @contentandwell .. I'm in the same boat. Booster in February!

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Me too!

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nimalw | @nimalw | Jan 10, 2022
In reply to @rosemarya "Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for..." + (show)
@rosemarya

Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

Jump to this post

Yes you are correct Rosemary.
We all have our own Baggage to carry with the transplant. Taking one day at a time is helpful and not getting too anxious about the future

REPLY
nimalw | @nimalw | Jan 10, 2022
In reply to @estrada53 "Hi @contentandwell .. I'm in the same boat. Booster in February!" + (show)
@estrada53

Hi @contentandwell .. I'm in the same boat. Booster in February!

Jump to this post

Let's hope it's not 4 5 and 6 !!!!!

REPLY
Saundrella | @saundrella | Jan 11, 2022
In reply to @rosemarya "Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for..." + (show)
@rosemarya

Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

Jump to this post

Thanks for your input!

REPLY
azdan99 | @azdan99 | Jan 11, 2022
In reply to @contentandwell "@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the..." + (show)
@contentandwell

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

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I agree!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 11, 2022
In reply to @contentandwell "@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the..." + (show)
@contentandwell

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

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CDC has updated the covid19 schedule for Booster for transplant.
I know that for Pfizer we can now get #4 after 5 months instead of 6 months. Yes, I verified this via my patient portal. So- I had my #3 pfizer Aug 16 and will schedule my #4 for next week!!!

Check your vaccine at CDC or ask your transplant team. Maybe you can get your Booster !

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1 reply
JK | @contentandwell | Jan 11, 2022
In reply to @rosemarya "CDC has updated the covid19 schedule for Booster for transplant. I know that for Pfizer we..." + (show)
@rosemarya

CDC has updated the covid19 schedule for Booster for transplant.
I know that for Pfizer we can now get #4 after 5 months instead of 6 months. Yes, I verified this via my patient portal. So- I had my #3 pfizer Aug 16 and will schedule my #4 for next week!!!

Check your vaccine at CDC or ask your transplant team. Maybe you can get your Booster !

Jump to this post

@rosemarya Thanks. I heard that might happen but didn’t know it was official. If that’s true I’m eligible now, my third shot was on August 10th.

I may still wait a bit though because we hope to go to Denver to visit my new granddaughter (and her parents 😉), probably in March and since the vaccine’s protectiveness does wane I will want it as strong as possible. Of course we won’t go if we are still in a surge.

I was mildly sick last week and despite testing negative for Covid I can’t help but wonder, I had the exact symptoms. I still have a dry cough.

My granddaughter is growing so fast! I need to see her.
JK

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