1. < Transplants

Have you received warning about Paxlovid from your transplant team?

Posted by bildad @bildad, Jan 10, 2022

I just received a warning from my liver transplant team concerning Paxlovid. It’s a Covid treatment drug from Pfizer. If one is taking immunosuppressants then Paxlovid is a no no. Ha y’all been warned about this?

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

athenalee | @athenalee | Jan 14, 2022
In reply to @leahdrose "I used to strongly believe in vaccines. I haven’t been tested for antibodies. I developed mild..." + (show)
@leahdrose

I used to strongly believe in vaccines. I haven’t been tested for antibodies. I developed mild neuropathy on my hands and feet as side effect from my meds. I’m taking Tacrolimus, Prednisone and Cellcept that was recently switched to Myfortic. After my third vaccine, my neuropathy has gone from mild to worse. The tingling, pricking and itching are bothersome especially at night. I also feel random mild pain on my feet. Hopefully, it won’t develop to severe pain. Who knows for how long it will stay, will it go away or maybe get even worse. I discussed with my doctor and was prescribed Gabapentin. Given the strong meds I currently take, I didn’t want to add more to it; therefore, I’m not taking this new med for as long as I can tolerate the neuropathy. I have no plans on taking the fourth vaccine in fear that my neuropathy will further get worse. I’m keeping safe at home, and hardly go out. When I do go out, I wear N95 and stay away from crowds. I pray hard to protect me and my family from any variants.

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Leah, I too had a significant increase in my PN after my two Pfizer vaccinations. My neurologist said it caused a flare up in my autoimmune diseases. There are many of us having these reactions under varying circumstances. A clinical trial is just starting.

If you haven’t reported to the VAERS, I encourage you to do so. I have always supported the vaccines to get us out of this dreadful pandemic, but I’m reluctant to get a third shot due to my situation and in light of the fact that most of us transplant recipients do not develop antibodies from the vaccines.

In case you haven’t seen it, here's a discussion on Covid Vaccines and Neuropathy - https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/?pg=111#comment-670742.

Athena

REPLY
benlam11 | @benlam11 | Jan 14, 2022
In reply to @hello1234 "Hi @benlam11 Congratulations on your wonderful transplant AND your covid antibodies. That is awesome...You won the..." + (show)
@hello1234

Hi @benlam11 Congratulations on your wonderful transplant AND your covid antibodies. That is awesome...You won the lottery! (I think the current percentage chance for an immune suppressed transplant patient to get antibodies from the vaccine is about 50%).

Hi @jennifer0726 You and I are in same boat when it comes to zero antibodies from the vaccine. Are you looking into possibly getting the new AstraZeneca Evusheld antibodies shot if the vaccine booster doesn't do anything? Evusheld is two shots that you get at the same time and you take it every six months to keep the covid antibodies in your system. The supply is very limited right now, but the manufacturer is gearing up for a greater supply in a few months.

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As an Immunocompromised person I would do whatever it takes to get antibodies. As we know getting Covid for us leads generally to much worse outcomes. I'm still very careful and wear a KN95 mask plus limit my exposure to others (especially potentially unvaccinated).

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jennifer0726 | @jennifer0726 | Jan 14, 2022

I had this test done at Mayo when I was telling my Neph it is hard to know if it is safe after 3 doses of vaccine. She offered to test me for it. I trust the lab test at Mayo far more than any a person can buy themselves. It was called SARS Cov-2 Spike AB.
I agree with you, about all these congressmen, Senators, public figures and others who despite having 2-3 vaccines, are still getting Covid.
I read recently they did a study in Europe and are saying getting too many Covid mRNA vaccines can lower a person’s immune system. Time will tell if they look at that here.

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1 reply
bildad | @bildad | Jan 14, 2022
In reply to @jennifer0726 "I had this test done at Mayo when I was telling my Neph it is hard..." + (show)
@jennifer0726

I had this test done at Mayo when I was telling my Neph it is hard to know if it is safe after 3 doses of vaccine. She offered to test me for it. I trust the lab test at Mayo far more than any a person can buy themselves. It was called SARS Cov-2 Spike AB.
I agree with you, about all these congressmen, Senators, public figures and others who despite having 2-3 vaccines, are still getting Covid.
I read recently they did a study in Europe and are saying getting too many Covid mRNA vaccines can lower a person’s immune system. Time will tell if they look at that here.

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And the public figures are just the ones we hear about. Keep your sails to the wind. It's great to be afloat with ya'll in these uncharted waters. Mind the boom when we come about! Because we likely will find all the jabs were in reality contraindicated.

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1 reply
nimalw | @nimalw | Jan 15, 2022
In reply to @leahdrose "I used to strongly believe in vaccines. I haven’t been tested for antibodies. I developed mild..." + (show)
@leahdrose

I used to strongly believe in vaccines. I haven’t been tested for antibodies. I developed mild neuropathy on my hands and feet as side effect from my meds. I’m taking Tacrolimus, Prednisone and Cellcept that was recently switched to Myfortic. After my third vaccine, my neuropathy has gone from mild to worse. The tingling, pricking and itching are bothersome especially at night. I also feel random mild pain on my feet. Hopefully, it won’t develop to severe pain. Who knows for how long it will stay, will it go away or maybe get even worse. I discussed with my doctor and was prescribed Gabapentin. Given the strong meds I currently take, I didn’t want to add more to it; therefore, I’m not taking this new med for as long as I can tolerate the neuropathy. I have no plans on taking the fourth vaccine in fear that my neuropathy will further get worse. I’m keeping safe at home, and hardly go out. When I do go out, I wear N95 and stay away from crowds. I pray hard to protect me and my family from any variants.

Jump to this post

My 3rd dose is due. But I am seriously thinking of giving it a miss . I took Azrazeneca for the 2 doses . I simply dont want any complications.

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1 reply
nimalw | @nimalw | Jan 15, 2022

Does anyone find going to the Dentist these days a bit scary!!! Specifically is who are immunocompromised

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1 reply
athenalee | @athenalee | Jan 15, 2022
In reply to @nimalw "Does anyone find going to the Dentist these days a bit scary!!! Specifically is who are..." + (show)
@nimalw

Does anyone find going to the Dentist these days a bit scary!!! Specifically is who are immunocompromised

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I try to think that they are the vulnerable ones this time, as here I am maskless and mouth wide open. They are always fully masked, sanitized, air purifier on…

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leahd | @leahdrose | Jan 15, 2022
In reply to @nimalw "My 3rd dose is due. But I am seriously thinking of giving it a miss ...." + (show)
@nimalw

My 3rd dose is due. But I am seriously thinking of giving it a miss . I took Azrazeneca for the 2 doses . I simply dont want any complications.

Jump to this post

@nimalw I’m just sharing my experience. Of course, not everyone has side effects from the vaccine. I was reluctant to get the third vaccine because I was only 6 months post kidney transplant and my body could hardly tolerate the tons of meds. I pursued getting the vaccine although there’s no guarantee that immunocompromised would be protected. Unfortunately, in my case, the risk appears to be more than the benefit. It completely changed my opinion on vaccines upside down.

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1 reply
nimalw | @nimalw | Jan 15, 2022
In reply to @leahdrose "@nimalw I’m just sharing my experience. Of course, not everyone has side effects from the vaccine...." + (show)
@leahdrose

@nimalw I’m just sharing my experience. Of course, not everyone has side effects from the vaccine. I was reluctant to get the third vaccine because I was only 6 months post kidney transplant and my body could hardly tolerate the tons of meds. I pursued getting the vaccine although there’s no guarantee that immunocompromised would be protected. Unfortunately, in my case, the risk appears to be more than the benefit. It completely changed my opinion on vaccines upside down.

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Hi i am watching omricon progress. Let's see how it goes.. my doc said he lost a number of patients after transplant to delta variant. But omicron seems mild . Seems so with the very low death rate

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cmael | @cmael | Jan 15, 2022
In reply to @bildad "And the public figures are just the ones we hear about. Keep your sails to the..." + (show)
@bildad

And the public figures are just the ones we hear about. Keep your sails to the wind. It's great to be afloat with ya'll in these uncharted waters. Mind the boom when we come about! Because we likely will find all the jabs were in reality contraindicated.

Jump to this post

I have had very little reaction, mainly a couple of days just being tired, and I’ve had 3 doses. I plan on getting the fourth next month. I am a transplant patient on Cellcept, tacrolimus, and Prednisone. Although the vaccine won’t entirely prevent someone from getting Covid, it will prevent a severe complication requiring hospitalization and time on a ventilator in the ICU or death. The vast majority of hospitalized patients are those not vaccinated. My son chose not to be vaccinated because he has chronic Lyme disease and wound up very, very sick. He had a doctor that does home visits so he had infusions at home. Thankfully he’s recovering.

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