IVIG seems to have shared some antibodies from... - CLL Support

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IVIG seems to have shared some antibodies from previous COVID patient

E-Lynn profile image
10 Replies

This has been discussed before here, but want to add my bit. I have had three Moderna mRNA jabs ( last on 10/15/21) and have been getting IVIG for ITP (immune system gobbling up platelets) dx 7/21. I am also in the US LLS study, and as mono Venclexta patient, have been producing some level of antibodies, unlike those on Gazyva+Venclexta. Anyway, did my latest LLS antibody study and my vaccine produced antibodie are now >2,500 units per mL. But I also tested postivie for the COVID spike protein antibodies, which are the ones you get from recent or previous COVID. LLS runs that test in parallel to the vaccine antibody test. I also send saliva to the NIH every two weeks as I'm part of their study of immune compromised patients and their response to COVID plus send them occasional blood. Last week i was negative on that saliva test. Thus it appears the IVIG that is harvested from at least one thousand people per bag is now showing more COVID recovery or undetected disease in that donor population. It leaves me in the interesting place as to how to answer the usual question "Have you ever tested positive for COVID"? I'll post this and then look to see if there is another thread with other sharing their similar story. I'm going to contact Dr. Larry Salzman from LLS who is overseeing their study. I've also asked my NIH study interface and will ask my NIH CLL doc, Adrian Wiestner, what he thinks may be happening.

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E-Lynn profile image
E-Lynn
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PaulaS profile image
PaulaSVolunteer

Interesting situation, Lynn, and some interesting questions.

I would imagine you're not the only person in a similar position, so hopefully you'll find someone to share stories with. It will be interesting to hear what your doctors say..

Wishing you well,

Paula x

P.S. Good to know you got some antibodies from the vaccines too.

AnneHill profile image
AnneHill

I have heard of this before. Someone has had vaccines and produced no antibodies and was not aware they had covid, They had a test and could only assume it was ivig.I am in the uk and my consultant told me that there were antibodies in the ivig. I have ivig next week. My third vaccine was pfizer on 23rd of October. Its about time I got tested but I keep putting it off because I assume Ibrutinib will give me a negative result.

Lets hope the ivig will keep us safe, Anne uk

Bethsaida profile image
Bethsaida

I am also in the LLS study and did not have antibodies after my 2 Pfizer vaccines. I have had CLL over 23 years (was monitored for 4 years every 3 months starting in 1994 for elevated wbc) but not given a diagnosis until 1998. I am pretty sure I could have been diagnosed much earlier but oncologist said he didn’t want to give me a diagnosis until he had to. So he just called it lymphocytosis. I was treated with small doses of chlorambucil and prednisone shortly after diagnosis due to enlarged lymph nodes and higher wbc. No treatment since but CLL has wrecked my immune system. I started IVIG after my 2 Pfizer vaccines due to infections. After zero antibodies, next LLS antibody test showed .9 antibodies, then next test showed 1.2. I get IVIG every 4 weeks and after my 3rd Pfizer my LLS test showed 16 antibodies along with a positive neocapcid test. I panicked somewhat and went and got PCR test and rapid test. Both were negative. It appears the antibodies were a result of the IVIG.

SERVrider profile image
SERVrider

That's interesting; I have SCIG every week (in fact, did the infusion this morning) and I think the serum was processed around a year ago (the expiry dates are 10/23). I know CSL Behring AG draw their plasma from around the world and it may well be that odd bits of antibodies are coming through the system. I had no reaction to the first two O-Az vaccinations but did react to the 3rd dose of Pfizer-BioNTech. Who knows?

lizfuccillo profile image
lizfuccillo

I have had a similar experience and am also participating in the LLS study. I have had 3 shots of the Pfizer vaccine which have produced virtually no antibodies however my last blood test (authorized by LLS) revealed I had antibodies from a prior COVID infection. Since I have never had Covid I assume the antibodies came from one or more donors of the IVIG infusions I get every two months.

CoCoLuna11 profile image
CoCoLuna11

So interesting Lynn. I look forward to hearing what you find out. Every 6 weeks I hope my ivig infusion is giving me a little more protection but I have not had anymore tests to confirm. Misty

wmay13241 profile image
wmay13241

GREAT NEWS !! CAR-T permanently damaged my wife's bone marrow so she must get IVIG infusions every 2 months. Although she has had 3 full-strength Moderna shots, we question whether the shots are effective for her.

AussieNeil profile image
AussieNeilAdministrator in reply to wmay13241

With respect to CAR-T and bone marrow, I think what's happened is that your wife's CAR-T therapy has worked extremely well and those CAR-T cells are continuing to destroy all B-lymphocytes newly produced by her bone marrow. (All CLL treatments do this, but with effective CAR-T therapy, those introduced CAR-T cells live on, so the patient effectively remains permanently in treatment.) No surviving B-lymphocytes means no new plasma cells to make antibodies to infections and vaccinations, so the patient needs IVIG infusions. That's normal for successful CAR-T treatment. Your wife may still develop a degree of T-cell cellular immunity.

Neil

wmay13241 profile image
wmay13241

Thank you AussieNeil - very helpful analysis.

CoCoLuna11 profile image
CoCoLuna11

I wonder if fragments of the antibody can register a positive response yet would not provide any further protection- is this possible?

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