Have you received warning about Paxlovid from your transplant team?

Posted by bildad @bildad, Jan 10 7:25pm

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?

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@jennifer0726

Hello Rosemary,
I am hesitant to get the 4th one because really what is the point? I had Mayo check for antibodies in November and they did two tests and they were negative-no antibodies present. Why would I expect a different result with a 4th? Now with Omicron vaccinated and boosted people are getting and spreading it just like unvaccinated. The long term side effects of this vaccine have not been studied, in addition to endless boosters. Now experts are saying what I thought at the beginning, pretty much everyone will get it. We might be able to avoid it with precautions and isolation. 😔 Sorry, my confidence in the vaccines has waned, just like they say the efficacy wanes.

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Jennifer, I get it. I understand what you are saying. I am also taking Tacrolimus and Mycophenolate, but have a longer history than you since my transplant was in 2009, if that matters. Anyway, the question of protection does remain for both of us, and for the emerging science of this virus. I can only hope that if I get it, it will be milder. And I also continue taking precautions seriously, regardless of what others do.
It is good that we have each other and other transplant recipients who also 'get it" because we need each other for support when we doubt, and when our friends and family don't understand our concerns.

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@rosemarya

Jennifer, I get it. I understand what you are saying. I am also taking Tacrolimus and Mycophenolate, but have a longer history than you since my transplant was in 2009, if that matters. Anyway, the question of protection does remain for both of us, and for the emerging science of this virus. I can only hope that if I get it, it will be milder. And I also continue taking precautions seriously, regardless of what others do.
It is good that we have each other and other transplant recipients who also 'get it" because we need each other for support when we doubt, and when our friends and family don't understand our concerns.

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Yes, I agree, Rosemary. Trust me, was one of the first to try to get a vaccine when they were made available to me because I am now 60 but it was only 59 when the vaccines came out. I got my first vaccine 3/17/21, 2nd 4/7/21 and my 3rd 8/28/21. I encouraged all family to get vaccinated, and most were including all 5 of my living children. I don’t doubt Mayo or my team, I trust them implicitly. Yes, it has only been 13 months since my transplant, but that doesn’t mean I am less informed, less likely to seek answers or less able to make decisions concerning myself.
I hope better options will come for all us soon. We indeed are better together. I appreciate all you do here on Connect.

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@hello1234

Good morning @estrada53 😊 Were you one of the lucky transplant patients that actually produced covid antibodies from the vaccine? I am on Cellcept and Tacronlimis so my antibodies number is zero after four doses. I think I will end up relying on a KN95 mask and the 77% effective AstraZeneca Evusheld every six months for my protection (and pray that a variant doesn't appear that evades the protection). I was also going to rely on the new Pfizer antiviral pill as "back up", but it doesn't sound like that pill is a great option for immune suppressed patients unless our Tacronlimis is very closely monitored for toxicity levels, (or it may be suggested that we don't take it all). I am not sure how Mayo transplant feels about this new drug Pfizer pill, but I will definitely ask at my next visit. I am hopeful that Remdesivir is holding against Omicron and will hold against the future variants. I saw that Regeneron is no longer helpful since Omicron became the dominant strain. Hopefully, the scientists will be able to keep "tweaking" these treatments to keep up with the virus mutations as they develop. Thank you for the heads up about the fourth dose of vaccine….(I wish it worked on me, but Tacronlimis and Cellcept are doing too good a job keeping my immune system "asleep" and my new kidney safe!) ❤

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My Kidney/Liver Transplant was in June 2019. I take 4mg of tac and 4 Cellcept capsules daily. After two Moderna shots I had zero antibodies. So I took two more – which did show antibodies. A month ago I went for my Booster, and since I had a Transplant, they gave me a full dose. I hope this information helps others. I have received ZERO direction from my Phoenix based transplant team and have been following Johns Hopkins instead.

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@benlam11

My Kidney/Liver Transplant was in June 2019. I take 4mg of tac and 4 Cellcept capsules daily. After two Moderna shots I had zero antibodies. So I took two more – which did show antibodies. A month ago I went for my Booster, and since I had a Transplant, they gave me a full dose. I hope this information helps others. I have received ZERO direction from my Phoenix based transplant team and have been following Johns Hopkins instead.

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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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@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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I would like to hear what Mayo Transplant says about it, but if they approve I might try to get it. I have heard nothing on it from them or my PCP. My PCP is very hesitant to prescribe anything it seems. I would certainly push for it if it’s available and proven to work and if Mayo backed me up. I would love to feel confident about traveling and getting out more! Have you actually received the Evusheld antibodies yet? Please keep us updated!

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@jennifer0726

I would like to hear what Mayo Transplant says about it, but if they approve I might try to get it. I have heard nothing on it from them or my PCP. My PCP is very hesitant to prescribe anything it seems. I would certainly push for it if it’s available and proven to work and if Mayo backed me up. I would love to feel confident about traveling and getting out more! Have you actually received the Evusheld antibodies yet? Please keep us updated!

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Hi @jennifer0726 😊 Yes, I definitely agree to discuss everything with transplant. My understanding is that Mayo is developing their guidelines regarding Evusheld and they will contact the appropriate immune suppressed patients through the portal when they are eligible. (I am not certain that each location has even received their supply from the federal government yet). But just a heads up….the current efficacy rate is listed at 77%, so it's not perfect. By the way, Congrats on your 13 month post kidney transplant anniversary!! Is everything going smoothly for you?

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I noticed Mycophelonate is not on this list. Does this mean I can take Paxlovid?

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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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@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

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@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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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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@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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