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John Hopkins Webinar on transplant recipients and vaccines

Posted by bosco17 @bosco17, Mar 24, 2021

They said after first shot 17 out of 800+patients had only a minimal antibody reaction .Also being on mycophelonate reduces effect of vaccines.WHATS GOING ON ??????

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bosco17 | @bosco17 | Mar 31, 2021
In reply to @luckonetj "Evidently Tacrolimus is a prophylactic for Covid 19 in preventing sever infection. Tacrolimus is immunosuppressive by..." + (show)
@luckonetj

Evidently Tacrolimus is a prophylactic for Covid 19 in preventing sever infection.
Tacrolimus is immunosuppressive by inhibiting calcineurin, and suppressing the early phase of T-cell activation, and the expression of many cytokines (IL-2, IL-4, TNF-α and IFN-γ) that are needed in the activation of the cellular immune response, possibly preventing a cytokine storm as observed in severe COVID-19.Jun 27, 2020
https://www.ncbi.nlm.nih.gov › pmc
Calcineurin inhibitors revisited: A new paradigm for COVID-19? - NCBI - NIH

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What about cellcept/mycophelonate? Does it also prevent a severe immune response to covid 19

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1 reply
estrada53 | @estrada53 | Mar 31, 2021
In reply to @bosco17 "What about cellcept/mycophelonate? Does it also prevent a severe immune response to covid 19" + (show)
@bosco17

What about cellcept/mycophelonate? Does it also prevent a severe immune response to covid 19

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From what i recall from the presentation and looking at the data, mycophenolate appears to interfere with the efficacy of the virus. Some of the candidates who were on mycophenolate/cellcept did not develop or developed few antibodies after the first dose. We are still awaiting the results of the second dose. Should be interesting!

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JK | @contentandwell | Mar 31, 2021
In reply to @contentandwell "@estrada53 I thought the conference was excellent despite them acknowledging that it was not great news..." + (show)
@contentandwell

@estrada53 I thought the conference was excellent despite them acknowledging that it was not great news so far.

I too am on sirolimus and prednisone.

I requested the antibody tests used by Johns Hopkins from Mass General but for some reason, the person who fields all of the portal messages said they were not doing that. I thought if they requested that maybe my insurance would pay for it whereas if I self-referred it would not so I went to get the test anyway. It turned out that they can only do those tests with a doctor's lab request. Since I had already paid a fee I went ahead and got the regular antibody test and I did test positive for antibodies. That test does not tell you just how much immunity you do have though. I asked my PCP for a lab request and she called today and has faxed one to the lab so I will go for that tomorrow. I will be very interested in seeing what my immunity will be. I am sure I will have the results next week. When I do I will let everybody know how I fared.

@livertex I suspect you had the same test I had. It just shows positive and negative, not how many antibodies you have.
JK

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I got the results of the antibody test today that shows how many antibodies I have. I knew I had some from the other test.

Here are the results that I copied from the report:
TESTS RESULT FLAG UNITS REFERENCE INTERVAL LAB
SARS-CoV-2 Semi-Quant Total Ab A 13.83 U/mL <0.80 01
Antibodies against the SARS-CoV-2 spike protein receptor binding domain (RBD) were detected. It is yet undetermined what level of antibody to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease. Studies are underway to measure the quantitative levels of specific SARS-CoV-2 antibodies following vaccination. Such studies will provide valuable insights into the correlation between protection from vaccination and antibody levels.
Interpretation:
Negative <0.80
Positive >0.79

I am going to have to ask the lab for some further explanation of these but apparently 13.83, my level, is less than .80 indicating I have negative immunity I think. Initially I thought the 13.83 was in comparison to the 95% immunity that the vaccines are giving most people but from the fact that it is below .80, another thing I don't understand -- when I took math 13.83 was more than .80. 😟

I had my second shot on February 14th, and the test was on March 29, so it was well beyond then. If there is a delayed response I am pretty sure that it would still be within that time frame.

Someone asked if knowing would change behavior. Yes, definitely it does. I have not seen my son for over a year and he very much wants to visit but I have been saying no since it requires a flight during which he could of course be exposed. If I thought I had decent immunity then I would feel more comfortable saying he could come. As it is I think he will have to wait until more people are vaccinated. I have heard that as time goes on more and more people are realizing that the vaccines are OK and signing up for it. I hope that is true. I have heard that some people object for religious reasons but even most churches are advocating the vaccine, and the concern about some relationship with aborted fetuses is only applicable for the J&J vaccine.
The Catholic Church has said if possible get a different vaccine but if not then get the J&J one.
JK

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1 reply
kedwards73 | @kedwards73 | Mar 31, 2021
In reply to @contentandwell "I got the results of the antibody test today that shows how many antibodies I have...." + (show)
@contentandwell

I got the results of the antibody test today that shows how many antibodies I have. I knew I had some from the other test.

Here are the results that I copied from the report:
TESTS RESULT FLAG UNITS REFERENCE INTERVAL LAB
SARS-CoV-2 Semi-Quant Total Ab A 13.83 U/mL <0.80 01
Antibodies against the SARS-CoV-2 spike protein receptor binding domain (RBD) were detected. It is yet undetermined what level of antibody to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease. Studies are underway to measure the quantitative levels of specific SARS-CoV-2 antibodies following vaccination. Such studies will provide valuable insights into the correlation between protection from vaccination and antibody levels.
Interpretation:
Negative <0.80
Positive >0.79

I am going to have to ask the lab for some further explanation of these but apparently 13.83, my level, is less than .80 indicating I have negative immunity I think. Initially I thought the 13.83 was in comparison to the 95% immunity that the vaccines are giving most people but from the fact that it is below .80, another thing I don't understand -- when I took math 13.83 was more than .80. 😟

I had my second shot on February 14th, and the test was on March 29, so it was well beyond then. If there is a delayed response I am pretty sure that it would still be within that time frame.

Someone asked if knowing would change behavior. Yes, definitely it does. I have not seen my son for over a year and he very much wants to visit but I have been saying no since it requires a flight during which he could of course be exposed. If I thought I had decent immunity then I would feel more comfortable saying he could come. As it is I think he will have to wait until more people are vaccinated. I have heard that as time goes on more and more people are realizing that the vaccines are OK and signing up for it. I hope that is true. I have heard that some people object for religious reasons but even most churches are advocating the vaccine, and the concern about some relationship with aborted fetuses is only applicable for the J&J vaccine.
The Catholic Church has said if possible get a different vaccine but if not then get the J&J one.
JK

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I think asking the lab is a good approach.
That said, the report states “ Antibodies against the SARS-CoV-2 spike protein receptor binding domain (RBD) were detected.”
To me, that means you do have antibodies. The result indication says less than 0.80 is negative and you have s lot more than that!
Just my thoughts...
Ken

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1 reply
JK | @contentandwell | Apr 1, 2021
In reply to @kedwards73 "I think asking the lab is a good approach. That said, the report states “ Antibodies..." + (show)
@kedwards73

I think asking the lab is a good approach.
That said, the report states “ Antibodies against the SARS-CoV-2 spike protein receptor binding domain (RBD) were detected.”
To me, that means you do have antibodies. The result indication says less than 0.80 is negative and you have s lot more than that!
Just my thoughts...
Ken

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@kedwards73 What I found confusing was that they had less than 80 on the same line as my results. I have done some research this morning though and I think that's just the format of their report, confusing as it is. The example I saw on their website had resulted in the 20s with the comment "high". Mine did not have that of course so I wonder just how much protection I have.

Has anyone heard when the Johns Hopkins Zoom will be, after they have deciphered the results when a person has had the second shot? I'm very interested in attending that. I am hoping that they will notify those of us who went to the first zoom. Also, does anyone know how to see the recording of that zoom?
JK

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1 reply
nanmargaret | @nanmargaret | May 4, 2021
In reply to @estrada53 "I indicated on their survey that I developed an inflammation in my parotid gland post dose..." + (show)
@estrada53

I indicated on their survey that I developed an inflammation in my parotid gland post dose 1. Also, dizziness in the evening. I'm seeing an ENT at Mayo for this. Not fun!

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Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in the Johns Hopkins study.
I had a mysterious inflammation in my left jaw one week post vaccine #1! It was intensely painful with swelling, then resolved very quickly just before I saw my dentist. How strange, because I wondered if it could be related to the parotid gland just in front of the ear.
Hope you are having luck with your research, I gratefully received a young heart, but not a high-risk one.

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2 replies
estrada53 | @estrada53 | May 4, 2021
In reply to @nanmargaret "Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in..." + (show)
@nanmargaret

Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in the Johns Hopkins study.
I had a mysterious inflammation in my left jaw one week post vaccine #1! It was intensely painful with swelling, then resolved very quickly just before I saw my dentist. How strange, because I wondered if it could be related to the parotid gland just in front of the ear.
Hope you are having luck with your research, I gratefully received a young heart, but not a high-risk one.

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Welcome to our Connect group. Congratulations on your young heart.
Thanks for your response and I'm sorry you had a similar reaction to the vaccine. I have an MRI scheduled to look at the right side of my face a bit more. I still have some swelling but the pain is gone. My research is going well and I am actually also interviewing post TX folks who accepted non-increased risk donor hearts, in case you're interested in sharing your story. Maybe?

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1 reply
nanmargaret | @nanmargaret | May 4, 2021
In reply to @estrada53 "Welcome to our Connect group. Congratulations on your young heart. Thanks for your response and I'm..." + (show)
@estrada53

Welcome to our Connect group. Congratulations on your young heart.
Thanks for your response and I'm sorry you had a similar reaction to the vaccine. I have an MRI scheduled to look at the right side of my face a bit more. I still have some swelling but the pain is gone. My research is going well and I am actually also interviewing post TX folks who accepted non-increased risk donor hearts, in case you're interested in sharing your story. Maybe?

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Thanks, I would like to hear more about it. Perhaps, you could private message me with information about yourself and your research.

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zon | @zon | May 5, 2021
In reply to @contentandwell "@kedwards73 What I found confusing was that they had less than 80 on the same line..." + (show)
@contentandwell

@kedwards73 What I found confusing was that they had less than 80 on the same line as my results. I have done some research this morning though and I think that's just the format of their report, confusing as it is. The example I saw on their website had resulted in the 20s with the comment "high". Mine did not have that of course so I wonder just how much protection I have.

Has anyone heard when the Johns Hopkins Zoom will be, after they have deciphered the results when a person has had the second shot? I'm very interested in attending that. I am hoping that they will notify those of us who went to the first zoom. Also, does anyone know how to see the recording of that zoom?
JK

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I’m in the study and will post as soon as I’m notified.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 5, 2021
In reply to @nanmargaret "Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in..." + (show)
@nanmargaret

Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in the Johns Hopkins study.
I had a mysterious inflammation in my left jaw one week post vaccine #1! It was intensely painful with swelling, then resolved very quickly just before I saw my dentist. How strange, because I wondered if it could be related to the parotid gland just in front of the ear.
Hope you are having luck with your research, I gratefully received a young heart, but not a high-risk one.

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@nanmargaret, Welcome to Connect.
Here is a link to the discussion where @estrada53 presents her story and her research project.

Looking to interview transplant patients: Increased Risk Donor Hearts
https://connect.mayoclinic.org/discussion/increased-risk-donor-hearts-risk-and-opportunity/

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