Let’s compare notes re: Covid vaccine

[SOct91]

Hi all, just wanted to compare notes regarding the Covid vaccine. I’ve seen a lot of discussions but in addition to the need for advocating, I’m curious what you are being told from your transplant teams. I asked a million questions in my appointment today and feel hopeless leaving with no answers. They are still on the fence about a third dose. I was not recommended J&J even thought it’s back from being paused. I was told the antibody test/any immunity test was pointless. Basically there is no way to tell how protected I am. He said I should only hanging out with fully vaccinated people. But what about it if it’s outside? He said I could fly which I was surprised about, obviously need to mask up though. What have you all been told (I guess aside from just act like you haven’t been vaccinated)?

FYI just about me I had my kidney transplant in 1991 and I’m now 35. I only take Cellcept. I had two shots of Pfizer vaccine.

[Shanny1024]

Hi there! I was told by my doctor to get the vaccine (preferably Moderna or the other mrna vaccine(s)). She also told me that they were finding that some transplant patients weren't developing antibodies, but that even if I didn't develop many, some was better than nothing at all. I was also told once I had the vaccine to continue to mask up, stay out of large crowds, wash my hands, no hugging, etc. I was so upset to find that even with getting vaccinated, nothing will really change for me/us. I miss spending time with extended family and friends, eating out, and being around other people. I'm noticing that things are pretty much returning to normal in most states, and in my state of Arizona, masks are no longer required to be worn in most, if not all public places. I can't help but feel a little resentful and scared anytime I'm out in public. I'm grateful to be alive and would never do anything to jeopardize my transplant (I'm on my second one.) However, it's really disheartening to find out the vaccine may not even protect the majority of transplant patients. I keep telling myself that I'm alive and ultimately, that's the most important thing. I'm hoping and praying that we hear good news very soon!

[SOct91 in reply to Shanny1024]

I feel you 100% it’s almost riskier now bc we are putting more faith in people being honest if we are out and about if they aren’t masked up.

[20plus in reply to Shanny1024]

I see my own nephrologist 3x a year as well as my transplant team 1x a year. I'm 23 years since a donation from my sibling. My nephrologist ordered an antibody test about 1 month after my second dose of Moderna and it came back negative. I asked my transplant team what their guidance is and was disappointed in their vague and potentially dangerous advice that they expected I had "some immunity". At this point all I can do is act like I have not been vaccinated.

[donnabethme in reply to 20plus]

I too am frustrated and scared. Advice is vague. I had my antibodies tested and then was told the results didn’t mean anything.Listened to a webinar by the NKF to discover my Mycophenolate doesn’t produce antibodies as much as other drugs.

Others don t understand and get angry if I request they wear a mask when with me

I was transplanted 25 years ago so I feel very lucky so far.

[CNeb]

If your transplant center hasn’t been following the Johns Hopkins study, provide them this link: jamanetwork.com/journals/ja...

CellCept is in the class of drugs (mycophenolate) that impacts the body to produce a response to the vaccine. If you look at the study those that had a kidney transplant had the worse response due to being on mycophenolates and usually at higher doses than other solid organ transplants.

I’m part of the study referenced above and did acquire a 3rd dose for the purpose of the study. I did work with my transplant center on if it was safe to do a 3rd dose or not. Since I had no neutralizing antibodies after both doses of the Pfizer vaccine we deemed it would be safe. After my 3rd dose I did finally produce antibodies, but at a level half of the general population. Currently we don’t know at what level one is considered protected and with the change of CDC guidance it is best to mask up and continue social distance even more so than before due to the CDC changes.

[Transplant2018 in reply to CNeb]

For your third dose, did you get the same vaccine or a different one?

[CNeb in reply to Transplant2018]

Same since the Pfizer dose was the only one that was available.

[SOct91 in reply to CNeb]

Thank you for this info! How did you get into the study?

[CNeb in reply to SOct91]

Saw that Johns Hopkins was recruiting individuals through social media and I applied to the study. I’ve submitted a sample pre-vaccine to confirm I wasn’t exposed to COVID already, then a sample two weeks after my first dose, a sample 1 month after my second dose, and a sample 3 months after my second dose which was also a little over two weeks after my 3rd dose. I will be submitting another sample here in the next two months for the 6 month sample. This will show durability of the antibodies I finally produced after the 3rd dose. The study is currently working with the proper agencies to add a 3rd dose for those immunocompromised to the EUA. I have also been added to study B and T Cells response.

[SOct91 in reply to CNeb]

I may have missed this, what are you on? Did you have that result because you are not on Cellcept?

[CNeb in reply to SOct91]

I’m on the following for the morning: 5mg Prednisone, 3mg Envarsus XR, 1000mg CellCept

Evening dose: 1000mg CellCept

Prednisone is also in the top 5 of drugs that impact immunity.

My first two vaccine doses were administered in the morning within 30 minutes to an hour of taking my morning meds.

[Eyak1971]

Thank you for asking the question. It is one on everyone's mind. We usually are not doctor's or scientists and must rely and trust are providers. I appreciate the answers already given. Wish doctor's were more upfront about what they do or do not know. They are centered on treatment as they were trained and covid is a whole new ball game. I understand that but our lives must go on. I guess as patients we hope that they are collaborating and researching with the same intensity as we are doing on this forum. Hopefully you will come up with answers and those can be shared. Take care.

[SOct91 in reply to Eyak1971]

That is the hope! I will say my Dr. was clear one of main issues is he/they did not know was the amount or threshold of antibodies or t-cell response needed to prevent illness and especially severe illness. But we can only hope even with minor vaccine effectiveness that we are protected from severe cases should we get it.

[Eyak1971 in reply to SOct91]

Received the following from my team this morning. Have other doctor's come out with guidelines?

Good morning Bruce,

We had a meeting with our doctors this am. These are their recommendations regarding Covid vaccination response in Transplanted patients.

*No need to get antibody tested.

*Vaccinate all those in your family/friend group when at all possible to create a ring of protection for you.

*When a booster is available possibly later this fall, we recommend that you get it.

*Follow the Covid prevalence in the your community.

*Continue to social distance when in the community and wear masks.

*If you are with someone who is fully vaccinated it is not required to mask unless you prefer to wear one of course

[Mond61 in reply to Eyak1971]

I feel that Medical staff do not have time to even look at the opposing data, they are just fed orders for higher positions, is the vaccine Safe? They are doctors not scientists how do they know for certain did they personally check...

[Eyak1971 in reply to Mond61]

You sound really frustrated. You need to identify who you really trust and what information they have to make a judgement call. For me I truly trust my doctor's. Not to say I haven't had doctor's that I find question with. Doctors have egos like other people. Have had a few that I wonder if they really went to medical school but the doctors that I have presently - I do trust. They do their research and our prudent when they pass on info. With their recommendations I got the 3 shots. No problems currently after my last shot 4 months ago. I still limit contact with others and always wear a mask indoors unless eating. Take care and be safe.