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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Hi @bildad Thank you so much for sharing the heads up from your transplant team about the drug interactions between tacronlimis, cyclosporine, sirolimus and the new Pfizer covid antiviral pill. It looks like the new Pfizer covid antiviral pill may increase the concentration of the immune suppression drugs to an unsafe level. (If we ever took the medication it would require very close monitoring, but it may be recommended that we don't take the drug at all). Did your transplant hospital send you a portal message or did they call you?

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The heart transplant team from Mayo Phoenix sent out s memo today telling everyone to get their fourth shot as soon ss they are eligible. It stated at this point you are not fully vaccinated until you get the 4th shot. COVID was the number cause of death for transplant recipients this past year at Mayo Phoenix. Currently 3 heart transplant recipients are hospitalized there with the virus. All 3 did not receive the second and/or third shot.
I assume the stats are similar for other organs as well.
The main point from the team is that the vaccine provides the best protection.
I hope to get my #4 on Friday.
Take care everyone.

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@hello1234

Hi @bildad Thank you so much for sharing the heads up from your transplant team about the drug interactions between tacronlimis, cyclosporine, sirolimus and the new Pfizer covid antiviral pill. It looks like the new Pfizer covid antiviral pill may increase the concentration of the immune suppression drugs to an unsafe level. (If we ever took the medication it would require very close monitoring, but it may be recommended that we don't take the drug at all). Did your transplant hospital send you a portal message or did they call you?

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A letter via Uncle Sam’s USPS.

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@estrada53

The heart transplant team from Mayo Phoenix sent out s memo today telling everyone to get their fourth shot as soon ss they are eligible. It stated at this point you are not fully vaccinated until you get the 4th shot. COVID was the number cause of death for transplant recipients this past year at Mayo Phoenix. Currently 3 heart transplant recipients are hospitalized there with the virus. All 3 did not receive the second and/or third shot.
I assume the stats are similar for other organs as well.
The main point from the team is that the vaccine provides the best protection.
I hope to get my #4 on Friday.
Take care everyone.

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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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@bildad

A letter via Uncle Sam’s USPS.

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Thank you @bildad 😊 Did the letter from your transplant hospital provide any details on why the new Pfizer covid antiviral pill can not be used with immune suppressed patients? Did they say it's a drug interaction or did they mention another reason? I did not receive a letter yet. (Which transplant hospital are you working with?)
Thank you so much for all this excellent info for us!! ❤

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@hello1234

Thank you @bildad 😊 Did the letter from your transplant hospital provide any details on why the new Pfizer covid antiviral pill can not be used with immune suppressed patients? Did they say it's a drug interaction or did they mention another reason? I did not receive a letter yet. (Which transplant hospital are you working with?)
Thank you so much for all this excellent info for us!! ❤

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I'm attaching a copy of the letter. At this time I would like to respect my provider's anonymity. I'm going through a rough patch with them right now and I'm likely to not say how I really feel if the mask is off.

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Thanks so much @bildad for this excellent information! I am so glad you shared this warning with your Connect family.
They definitely appear adamant that this new drug is not for us! No worries on the hospital name. I was just curious if I am missing out on messages coming to Mayo transplant patients. (Sorry to hear that you are going through a rough patch with your provider. I am sure that's stressful!).
Thank you again for being so thoughtful and sharing such important news about this new drug! ❤

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@hello1234

Thanks so much @bildad for this excellent information! I am so glad you shared this warning with your Connect family.
They definitely appear adamant that this new drug is not for us! No worries on the hospital name. I was just curious if I am missing out on messages coming to Mayo transplant patients. (Sorry to hear that you are going through a rough patch with your provider. I am sure that's stressful!).
Thank you again for being so thoughtful and sharing such important news about this new drug! ❤

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@hello1234, I don't think you missed a message from your transplant team. In my experience, I do not receive mass distributed messages via my Mayo Patient Portal, unless it is something that directly applies t directly to my own situation. I have on occasion seen general notices, that do not show up on my email notifications, when I log in.

The statement in bold text in the letter that @bildad shared: "If you are diagnosed with Covid-19, Please contact your transplant coordinator …" is a very important one for all of us. When my husband tested and retested positive with Covid-19 in 2020, I immediately got tested and contacted my coordinator. Her advice was to let her know my results and when I tested negative, she told me to contact her if anything changed because she and the transplant team would want to direct my local physicians on my treatment.
I think that I am fortunate to have a PCP who observed in routine labs 20ish years ago a possible liver complication, who sent me to a specialist, and who now directs my daily health care locally. He and my local ER are always ready and willing to coordinate with my Mayo transplant team. They have, on occasion, contacted the Mayo Clinic Transplant Dept. It is a good feeling for me to know that Mayo can direct my care when needed, from a distance of 800 miles!
Hello, do you know that Mayo Transplant has a 24/7 phone number for emergencies after regular hours?

For anyone with a transplant: What guidance has your transplant team offered for your care/treatment as a result of a positive Covid-19 test, or monitoring from a distance?

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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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Not sure I will get a fourth vaccination as I have zero antibodies after my third. If I got zero antibodies with three vaccinations it makes me doubt I would receive any antibodies with a fourth. Tacrolimus and Mycophenolate. I will continue to follow my team at Mayo, and Covid precautions. Hopefully, there will be something proven available to prevent infection for us soon.

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Thank you @rosemarya ❤ Yes, I have the Mayo transplant 24/7 "hotline" phone number programmed in my cell phone for emergencies. Thank you for double-checking with me!! My experience with the 24/7 phone number has been AMAZING! In typical Mayo Clinic fashion, their call system and their transplant team are both fantastic. I would definitely call them if needed. Thank you for the reminder!
A friend of mine with a kidney transplant in Philadelphia recently contracted Omicron and she was directed to get monoclonal antibodies. She is slowly doing better. Fever broke, sore throat better, but very congested, and very intense fatigue…but no need for hospitalization. She feels like she's improving and her transplant team is guiding her through what to do over the phone. Thank goodness it appears that Omicron is a milder illness for many people. But it still sounds awful. I definitely don't want covid. I have my fingers crossed that this current surge will peak and come down in a few weeks here in Florida. 😊

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@jennifer0726

Not sure I will get a fourth vaccination as I have zero antibodies after my third. If I got zero antibodies with three vaccinations it makes me doubt I would receive any antibodies with a fourth. Tacrolimus and Mycophenolate. I will continue to follow my team at Mayo, and Covid precautions. Hopefully, there will be something proven available to prevent infection for us soon.

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@jennifer0726, I got my 4th dose this morning. I didn't know my antibody level. I do plan to ask about my antibody level when I am at Mayo for my annual evaluation later this spring. It is kind of odd to be sitting here at home wondering if I will have any side effects, or if I will get antibodies. However it does make me feel good that I am now fully boosted and my sons are delighted about it. It was labeled on my Covid-19 Vaccination Record Card as my 3rd dose (since we are supposed to get 3 primary doses) I had a real interesting conversation with the nurse who gave me the shot, and when I left, she gave me a couple of N95 masks because of my transplant status.

Jennifer, might I inquire why you are not sure about taking the 4th dose when you are eligible? Did you have bothersome side effects?

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@rosemarya

@jennifer0726, I got my 4th dose this morning. I didn't know my antibody level. I do plan to ask about my antibody level when I am at Mayo for my annual evaluation later this spring. It is kind of odd to be sitting here at home wondering if I will have any side effects, or if I will get antibodies. However it does make me feel good that I am now fully boosted and my sons are delighted about it. It was labeled on my Covid-19 Vaccination Record Card as my 3rd dose (since we are supposed to get 3 primary doses) I had a real interesting conversation with the nurse who gave me the shot, and when I left, she gave me a couple of N95 masks because of my transplant status.

Jennifer, might I inquire why you are not sure about taking the 4th dose when you are eligible? Did you have bothersome side effects?

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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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