Johns Hopkins Transplant Vaccine study

[Xplantdad]

Hello everyone, it's been a while since I have been on here. We finally got Mayo here in AZ to agree to do the antibody testing on Holly in January...after she developed a really strong reaction to the booster shot we all took. She ended up with a fever of 103 for two days. The kidney transplant doc stated, "Well, I guess her immune system is working" 

Funny, Loma Linda Hospital (where Holly had her heart transplant done in 1990)-has been doing antibody testing for more than a year now-on their heart transplants who have had the shots.

When Mayo finally agreed to do the antibody test, Mayo's kidney transplant team shared the study that Iolaire was involved with . I let them know that I had already seen it.

Anyways, her initial test came out with > than 250. The doc that we dealt with was a kidney transplant doc-and she recommended a 4th booster at the 6 month time frame. I told her that two weeks prior to the booster time frame, we will get another antibody test...to see where Holly's level is at. If it's still greater than 250, we will most likely hold off.

Two reasons why:

1) Holly's heart transplant team is not 100% on board with continued boosters. The reason? Not enough concrete data regarding the long term side effects of the shot

2) Still not enough data out there for the length of time the antibodies stay at desirable levels

I did let Mayo know that as a world class hospital, they should have been at the forefront of the research (Like John Hopkins was). For the past two years, they have a group of over 400 people just here in AZ...that go for routine blood tests anyways, so why not add an additional test to start gathering data on antibody levels in S.O.T. patients? Their initial answer (and the same answer for the last year) was that they "wouldn't know what to do with the data" (also the same answer was given on numerous webinars I attended from different transplant hospitals/groups).

The latest answer I got during our last visit was that Mayo didn't have a 'viable' treatment for people-if an antibody test was done and the patient exhibited low or non-existent antibody levels.  Which brings us to Evusheld. We were told that during our last visit that Evusheld is the "go to" for folks with low antibody levels.

BTW, we got a message from the Mayo Kidney transplant team that we were chosen as a possible participant for a "study" with Evusheld. We politely declined, figuring someone who had a lower antibody level would get a greater benefit

Have a great Sunday... 

[fifal9]

I got an email from the John Hopkins study yesterday.

Dear Study Participant, 

 Thank you for your participation in our COVID-19 Observational Study for individuals with Chronic Conditions.
[/color]The U.S Food and Drug Administration (FDA) is now recommending a second booster dose (fifth dose) of Pfizer or Moderna 4 months after a first booster dose in immunosuppressed patients. For more information regarding second booster doses, please see the following link:

[/color]https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-second-booster-dose-two-covid-19-vaccines-older-and[/color][/color]
[/color]In light of this announcement, we are writing to ask that if you plan to receive a second booster dose, please let us know as we would like to collect samples both before and after this dose.  [/color][/color]
[/color]Additionally, as of 3/28/2022,  the antibody tests administered by LabCorp can now detect antibodies up to >25,000 U/mL. We are unable to re-test any previous samples that were only detected up to >2500 U/mL.

Where I live some eligible people are just starting to get their fourth shot. I got my forth shot at the end of February. I haven't got around to getting a new antibody test yet. I think I heard they are not going to be free anymore, but that might just have been about the test kits for people checking to see if they are actively infected.

[Simon Dog]

Had my quarterly maintenance appointment yesterday.   I learned the hospital I use recently adjusted the rationing criteria for Evosheld to include transplant patients, and the transplant support team is having the infusion clinic (where this hospital gives the injections) contact me for the appointments (2 shot series).

I cannot know for certain, but I am under the impression this would not have been discussed if I did not bring up the topic.

[iolaire]

Had my quarterly maintenance appointment yesterday.   I learned the hospital I use recently adjusted the rationing criteria for Evosheld to include transplant patients, and the transplant support team is having the infusion clinic (where this hospital gives the injections) contact me for the appointments (2 shot series).

I cannot know for certain, but I am under the impression this would not have been discussed if I did not bring up the topis.

That’s great. From what I’ve seen Evusheld has been available for people who are working hard to get it at alternative site but at the large hospitals it’s much harder to find.

I got my antibody test on Friday and I’m at 3800. The test now can measure above 2500 all the way to 25000. That’s six months post dose 4, now I need to decide if it’s time for booster five.

[UkrainianTracksuit]

Finally joined the 4th shot club. Now it is up to me to track the days until my 5th shot. Fifth is definitely a go ahead though. Less red tape.

Anybody completed their 5th shot yet? If anyone is alive on here. 

(And oh, not a peep about Evusheld.)

ETA: About the Evusheld, based on my tx hospital allocation method, I still wouldn't receive it. I am on a medium-low dose of immunosuppression so they are focusing on those with the highest doses due to the limited supply.

[iolaire]

Anybody completed their 5th shot yet? If anyone is alive on here. 

Last week I got my 5th. My level prior 2673 U/mL on the new scale that reports up to 25k.  A month prior I was at 3385 U/mL. The 5th shot was my decision without consultation.  I've not sought Evusheld.

[MooseMom]

I got my second booster yesterday.  I had an argument with the lead pharmacist at my local Walgreens who took the time to print out the latest CDC guidelines about vaccines/boosters to prove that he could not give it to me.  He neglected to read the whole thing, so I had to draw his attention to the tiny paragraph about recommending giving a second booster for immunocompromised people.  He grew sheepish, and he allowed me to have it.  Nothing is easy.

I am sorry, UT, that you are not yet "eligible" to receive Evusheld.  The Infectious Disease experts I follow both on social media and on various webinars all agree that getting fully vaxxed and boosted is the most important thing for us to do.  Evusheld gives you only antibodies and does nothing to trigger a T or B cell response like the vaccines do (at least in those who are able to amount an anti-spike antibody response in the first place), and it's for this reason that it's a good idea to focus on getting that fifth dose (second booster) and wait until there is enough Evusheld to get to you.  If you are on a medium-low dose of immunosuppression, particularly MMF or MMA, the vax/boosters should give you more protection than given to those of us on higher doses.

Keep us posted on Evusheld/fifth booster!

[Simon Dog]

 I have an early July appointment with an infections diseases MD to get Evusheld prescribed.

One of the other major hospitals in Boston administers Evusheld on a nephrologists order; the one I go to requires the ID consult. 

[UkrainianTracksuit]

I had a similar moment with the pharmacist at the pharmacy too about getting the fourth shot. It took forever for them to look up who was eligible and immunocompromised people were at the bottom of the giant bloc of text. "We don't usually have people your age coming in for boosters." That took up most of the time!

As for the lower-medium dose of immunosuppression, that's the joy of BK Virus (Burger King Virus as I like to call it). Immunosuppression at a normal/high dose, damn virus titre jumps up and takes a long time (at least in this case) to get back into acceptable levels. Everyone knows this though so why state it.  There's always something going on with these bodies and keeping them in some odd balance. 

[Simon Dog]

Until I turn 65, I have to get an MD order for my annual flu shot as the neph wants be to get the extra strength version.

[UkrainianTracksuit]

I came here to share this update but just read the sad news about kitkatz. I apologize if this comes across as really disrespectful. 

Today (May 31) new guidelines were released about COVID-19 care and transplant recipients. A lot of the same as a before, a lot of new nuance. Read here: https://www.covid19treatmentguidelines.nih.gov/special-populations/transplant/

My personal takeaway from this the line where lowering immunosuppression dosage ahead of vaccination is not recommended. WTF was my tx team doing then...

[Cupcake]

Hello all. I have had 5 doses of Moderna (the last one was a half dose) and one dose of Evusheld 5 months ago. My semiquantitative antibody level with Labcorp is 110. It ain't nuthin, but its not what Iolaire achieved. I'm going to advocate for a second dose of Evusheld. My nephrologist said I may have to pay out of pocket $300, but I said I'd happily pay that.

Otherwise I'm doing great-splashing around the pools in Florida, latest GFR is 97, 4 years post transplant. Still living pretty cautiously, masking indoors, only dining outdoors at restaurants, etc.

[cassandra]

Glad to hear from you Cupcake, and great to read you are doing so well! Good luck with getting more Evusheld.


Love, Cas

[iolaire]

Good luck cupcake

[UkrainianTracksuit]

If anyone is around to answer -

How long did you wait in between your last booster and bivalent booster?

I am seeing different times. One says 5 months, another says 3 months, and another says "3 months with informed consent." Nurse handling tx patients locally hasn't returned my call.

Thanks...

[iolaire]

Hopkins just had a webinar on Thursday, I'm fairly sure they are saying you can get it after two months (people like us).
https://jhjhm.zoom.us/rec/share/VLyvroxJyypfWpB0aFlhAkKNgqGls2X5flGFrHQUyR962_Dc_13KmWWgA4soVE5i.IqJl-CDv_AHi3RVy?startTime=1663869147000

Passcode: transplant2022!

They also mentioned this machine learning based tool to Predicting vaccine response after a 3-dose series.  I also believe from the first 30 minutes I watched that their appears to be befits to switching vaccine brands among the people who are not building antibodies.
http://www.transplantmodels.com/covidvaccine_d3/

I'm waiting to get the blood vials and do the at home blood draw for the Hopkin's study prior to getting my bivalent booster.

[SooMK]

I had about 6 months between my last booster and the variant (3/18, 9/11). I tried to get another booster in August but the pharmacies were like, "you've had all you can get and the new one is coming out in the fall". So I just waited. All mine have been Moderna. I just get whatever Walgreen's is handing out.

[Simon Dog]

My nehhrologist and infectious disease MD both mentioned there is some evidence switching between Moderna and Pfeizer is better than sticking to one brand.

I don't know what the evidence is regarding alternate which butt gets tixagevimab and which gets cilgavimab when getting multiple doses at scheduled intervals   

[iolaire]

I also believe from the first 30 minutes I watched that their appears to be befits to switching vaccine brands among the people who are not building antibodies.

I went back to the slides.  This is not peer reviewed by more antidotal observations.  The slides on this topic are start at about 18:00, specifically for dose 3 for people not building antibodies prior the switch from the first two Pfizer to a Moderna does resulted in slightly more response on the positive yes/no test and a general higher response on level side.  Later on they say for a third dose J&J initial responses were not significantly different from Pfizer but at about the six month point antibody levels grew higher.  If you are not building antibodies then its worth a try to change brand.