Have you received warning about Paxlovid from your transplant team?

@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?

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.

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.

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.

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.

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.

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!

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?

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

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.