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When will the CDC update their guidance on immunocompromised people and how much protection were getting from these vaccines. Are we still at risk even after vaccination?
I sent this in response not sure if it made its way to you. I’m copy and pasting info.
In reply to @rosemarya "@zon, do you know if the T and C cell study is open to someone who…" + (show)
Yes, I bet they would love as many people as possible. This is email to the study group. They usually respond within a day. Just like Mayo they are wonderful, dedicated people that have been great to work with. I encourage anyone that is interested to reach out and ask to be added to T and C cell studies. Feel free to pass this around. The more people we have involved the better!
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@zon I sent a request to join the study at Johns Hopkins, giving them my pertinent details, and they responded several days later saying the felt they did not need more participants at this time. I was disappointed, but glad I checked.
I’m glad to hear you had good results, Lori! I just had blood tests today and wanted to have them check for antibodies, but my Mayo doctor didn’t think it was necessary. ☹️ I don’t understand his reluctance, and I would really like to know so I don’t put myself at risk! I have flown on a plane, eaten in restaurants, been around other vaccinated people, etc. I haven’t been on Tacrolimus for months, so maybe that will help the vaccine’s effectiveness. It would just be nice to know. Thanks for addressing my concerns.
My Mayo doctors blew me off when I asked for an antibody test. So I got one from my local doctor. Over 2 months after my second Moderna dose it showed zero antibodies ( which according to Johns Hopkins seems to be more prevalent in older (70) whole organ transplants (Liver and Kidney). The culprit drug seems to be Mycophenolate. I wish the MAYO would be more transparent in their research, as the most current information seems to be coming out of Johns Hopkins.
I am age 64 and post pancreas transplant for nearly 16 years. Initially I was on Mycophenolate and Tacrolimus. I had problems with Mycophenolate and was switched to Sirolimus. Eventually the Sirolimus was dropped. Now I’m just on a small dose of Tacrolimus. My medical providers recommended that I get the Pfizer or Moderna vaccine. I got Moderna, the first dose in March and the second in April. I saw the webinar in May from Johns Hopkins regarding the efficacy of COVID vaccines for transplant patients. There was some discussion about further research pertaining to the particular type of organ transplanted. I was wondering if being post pancreas transplant would be of any value to the studies being done as it seems most of the research thus far has focused on kidney, liver transplants. I was also curious as to what my antibodies, T cells & B cells would be. I contacted Johns Hopkins to inquire about participating in a study. I was told that I would not qualify for a study since I had already received both doses of a vaccine. Oh well.
Two months after my 2nd Pfizer shot I took this new blood test that is not available at all labs.. The test showed that I have high antibodies for this virus. My number is 250. The blood test is for people to take after their shots. It is called SARS-2 CoV Semi-Quant Total Ab Code# 164090. I have had 3 transplants since 1985.
@reo, I want to reach out across the miles, and welcome you to Mayo Connect. We are an online community where patients meet, and share experiences, and encourage each other. I am happy that you have joined us here.
Wow! To be a recipient in 1985 is amazing. I had a simultaneous liver and kidney transplant n 2009. I bet things have changed since your first transplant. I want to invite you to the Transplant Discussion Group. What organ(s) did you receive? I will be here to help you find related discussions.
@reo, Might I ask who ordered this test? And did they explain what it means for you? ie How does it affect how you will go about your everyday life now that you know this number?
Thank you so much for this information! I'll ask my transplant team about it.
Does anyone know if Organ Transplant recipients on Mycophenolate have developed antibodies after getting COVID-19? (not vaccine)
I am NOT recommending it, but I had my fourth dosage of the vaccine today. I started to get a little movement on the protective metrics after third dosage. Very interested in the results and hopeful t can share some positive news. Again, not recommending this approach.
@jfk Why did you choose to get extra doses and where did you get them? Are you being monitored in as part of an authorized research study?
@jennifer0726 I take Mycophenolate and I have had both doses of the Pfizer vaccine. I had my liver and kidney transplant 12 years ago.
Recently I had my annual evaluation, and when I inquired about my protection (antibodies), I learned that this is an issue that is being studied by the scientists. No longer is the antibody test given routinely because as researchers learn more and more about this new virus they are looking into the intricacies of our immune system response. Currently there is not a standard level of protection that can be measured. It is just like the flu vaccine, where we can hope to avoid the serious complications if we catch it.
As transplant recipients, we already know that as immunosuppressed individuals, that we must take precautions concerning our health and avoiding germs. For those of us who are long term recipients, this is our normal way of life. ie Wash hands, avoid close contact and crowds especially during flu season, avoid hand shaking.
Jennifer, I don't know if your question can be given a definitive answer. Perhaps a conversation with your own transplant team would be helpful. I see that you are a recent transplant recipient. Were you instructed by your transplant team about how to protect yourself during a 'normal – nonpandemic' post-transplant life?
I was told the same about the antibody test, however I had it done outside the MAYO and was told I had none (Moderna). I am getting close to traveling to see my family (in Europe), and they have been fully vaccinated. However the major travel, all the Airports, Trains, etc, does concern me. I question if the J&J vaccine has shown a greater efficacy than the mRNA vaccines? If anyone has seen a study ? Please let us know. I saw the comment on the individual with 4 doses of the same vaccine and saw on the Johns Hopkins Webinar that France has approved a third dose for immunosuppressed patients. I just hope this research is a priority, especially since it is a cost center in research budgets.
Thank you for your response Rosemary, however you misread my question.
I have received both Pfizer vaccinations, and been following the John’s Hopkins Study, etc concerning us and vaccines.
I asked if anyone knew if those who have actually had COVID-19 and solid organ transplants especially those on mycophenolate have had antibody responses.
This is different than vaccine response.
How did you get additional doses 3 & 4? Has this been approved by your Transplant team? Is it a study?
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