Transplant: No or Few Antibodies after COVID Vaccination

Posted by nkdonahue @nkdonahue, Feb 27, 2021

My daughter received a kidney from her father 15 months ago. She is participating in the Johns Hopkins study of transplant patients undergoing vaccination. The study required that she be tested for antibodies just before she received her second shot. The test results showed that she had no antibodies to Covid-19. I wonder if anyone else on this list is participating in the Hopkins study and can share their experience. I know the study will be asking participants to repeat the antibody test four of five more times over the year after being fully vaccinated. Thank you

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@leahdrose

Thank you 😊
I’m almost back to normal with certain limitations. I’m having hot flashes, mild tremors, and my hair is falling out a lot. Hopefully, my immunosuppressants dosage will be decreased, and the side effects will be minimal or completely go away.
I will request my nephrologist to get me tested for antibodies after my third vaccine in November.

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My transplant anniv.coming up 10/20 /21. Lots of effects from all those drugs. Hair was a problem I take biotin 5000 a day 6 mos.now and my hair grew..and seems thicker...good luck...jackie

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@gingerw

@leahdrose Congratulations on your recent transplant! And, welcome to Mayo Clinic Connect. I am Stage 4 [almost Stage 5] kidney disease, and have had 3 doses of vaccine. My husband is a kidney recipient and also has had 3 doses of Pfizer vaccine. Your body has a lot to get used to now, with new medications and the adjustments that come along with them. How are you feeling? Will you get tested for antibody levels after your third dose in November?
Ginger

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@gingerw Did you get tested for antibodies? My transplant team will not put a lab order for the test, they say there are many other things that influence immunity but I did get my PCP to put one in for me. I am going on Monday for the test so I should a couple of days after that.

It may not tell everything but it does tell some of the story. I would rather know some than none.
JK

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@millds

I am a liver and kidney transplant recipient in Oct. 2017. I had my first two Moderna vaccinations in Feb. & March with the third in August. The antibody test after the first two showed no antibodies. The spike protein antibody test done this week showed positive >250! We still don't know what that means and how much protection that represents. But, it demonstrates some degree of antibodies from the third vaccine. I just don't feel quite as naked during this dangerous time for us. All the precautions are still necessary.

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@millds, We are alike and also different-
I'm also a liver and kidney recipient.(2009). I take Cellcept and Tacrolimus. I had Pfizer vaccine in Feb and March. I had my booster (#3 for immunosuppressed) in August. I don't know my antibody level and I am comfortable without knowing until there is some reason for me to get an antibody test.
Like you, I continue with precautions, and I am careful of when and where I go somewhere. I have been known to walk out of a store if I am not comfortable there. I also felt a huge degree of comfort when I got that 3rd shot!
I will get my flu shot next week, just as I have done forever! My husband, by the way, had never had the flu shot until I got my transplant and the transplant team told him that he "will need to get it from now on". Neither of us has had the flu, but he did get a mild case of Covid19 last year in November. I never got it!

Keep on doing what you are doing! And remember to stay on schedule with Labs, Medicines, and always take the necessary precautions.

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@leahdrose

Hi! I was diagnosed with IgA Nephropathy almost 20 years ago. I followed strict diet, almost vegetarian and was cautious with sodium, potassium, phosphorus and protein intake. Although, fruits and vegetables are generally good for the body, some of them are high in potassium. Knowing what you can and cannot eat is very important. My friends and family suggested that I eat this and take that, they’re good for you, but with kidney disease, it’s different. There’s a lot of dietary restrictions.
I was blessed with kidney transplant 4 months ago. My body is still adjusting to immunosuppressant medications. My doctor recommended that I get the third vaccine 8 months after my second dose, which will be in November. I’ve read several articles the transplant recipients develop zero or low antibodies to protect from Covid. For the time being, I’m staying safe at home.

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@leahdrose, Welcome to Mayo Clinic Connect. Twenty years sounds like a long time ago. In fact aroujnd 20 years ago is when I was diagnosed with my liver disease (PSC) that was progressive and without a cure. I can really understand how you must have felt with all of the 'helpful' suggestions from family and friends. I had the same experience with advise from well-meaning friends.
You are absolutely correct that your body is still adjusting to the immunosuppressant medications, along with continued healing and gaining of strength. It sounds like you have a good relationship with your doctor who is leading your Covid19 vaccination schedule.
Are you comfortable with getting outside and getting some exercise? Now that, I presume, you are feeling better, what are you doing with your time while being safe at home?

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@athenalee

Congratulations on your transplant! I’m a liver transplant recipient just over a year ago. I still have minor tremors, although mine may be related to an autoimmune disease I have, or both. They did decline, however, after I was able to reduce Tacrolimus. If you haven’t tried biotin for hair loss, it’s a blessing! Pretty much immediately after I started taking it my hair loss declined and it’s no longer an issue. I started with 5,000-10,000 mcg. Another thing that helps is to use a light amount of argan oil along your hair roots, let it sit, and then wash it as normal.

I was reading a recent post which had some good dietary input. If you are interested and have time, we’re starting a transplant recipient culinary arts webinar series. We’d like to feature different recipes and tips which pertain to the health needs of transplant recipients and those on transplant wait lists.

Here’s the original post -https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

Our first event will be on Thursday, October 7 at 4 pm western / 6 pm central / 7 pm eastern.

To your continued post transplant health!

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@athenalee, @leahdrose - Here is a correction to the link to thr Culinary Arts Zoom Sessions which start on Thursday, October 7 at 4 pm western / 6 pm central / 7 pm eastern.
I think the hyphen caused a problem.😉
https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

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@rosemarya

@athenalee, @leahdrose - Here is a correction to the link to thr Culinary Arts Zoom Sessions which start on Thursday, October 7 at 4 pm western / 6 pm central / 7 pm eastern.
I think the hyphen caused a problem.😉
https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

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Oh ugh! Thank you so much Rosemary!

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@contentandwell

@gingerw Did you get tested for antibodies? My transplant team will not put a lab order for the test, they say there are many other things that influence immunity but I did get my PCP to put one in for me. I am going on Monday for the test so I should a couple of days after that.

It may not tell everything but it does tell some of the story. I would rather know some than none.
JK

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@contentandwell I go this coming Thurs on 9/30 for labwork for nephrology, and had my PCP also put in lab order for antibody test. On my next oncology appt I will confirm with Dr. Y about getting my flu shot [I usually get it as soon as it is available!] Yeppers, real curious what the antibody levels will be. They say some multiple myeloma patients do not have the levels of antibodies the medical community would like to see.
Ginger

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@gingerw

@contentandwell I go this coming Thurs on 9/30 for labwork for nephrology, and had my PCP also put in lab order for antibody test. On my next oncology appt I will confirm with Dr. Y about getting my flu shot [I usually get it as soon as it is available!] Yeppers, real curious what the antibody levels will be. They say some multiple myeloma patients do not have the levels of antibodies the medical community would like to see.
Ginger

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Good luck @gingerw and @contentandwell with the antibody development!

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@rosemarya

@leahdrose, Welcome to Mayo Clinic Connect. Twenty years sounds like a long time ago. In fact aroujnd 20 years ago is when I was diagnosed with my liver disease (PSC) that was progressive and without a cure. I can really understand how you must have felt with all of the 'helpful' suggestions from family and friends. I had the same experience with advise from well-meaning friends.
You are absolutely correct that your body is still adjusting to the immunosuppressant medications, along with continued healing and gaining of strength. It sounds like you have a good relationship with your doctor who is leading your Covid19 vaccination schedule.
Are you comfortable with getting outside and getting some exercise? Now that, I presume, you are feeling better, what are you doing with your time while being safe at home?

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.@rosemarya Thank you for the warm welcome. I believe my kidney disease stretched for twenty years without dialysis from following strict diet. I was blessed to have transplant without dialysis. I’m happy with my nephrologist who is caring and on top of my health.
I’m not comfortable getting outside so I do my walking and mild exercise in our backyard. I love cooking and baking which keep me occupied everyday. I also never run out of small projects at home. I took early retirement three years ago to focus more on my diet and health. I think I’m ready to go back to the workforce. For the time being, I’m Iooking for a part-time remote job to continue staying safe at home.

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@jackie421blfdgurl

My transplant anniv.coming up 10/20 /21. Lots of effects from all those drugs. Hair was a problem I take biotin 5000 a day 6 mos.now and my hair grew..and seems thicker...good luck...jackie

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Since I just had kidney transplant four months ago and still adjusting to the strong meds, I’ll ask my nephrology if I can take Biotin. For now, I’m using Biotin shampoo and conditioner.
Thank you for the tip.

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