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Thread: Dr. Appt. - Vaccine did not work (no antibodies)

  1. #11
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    Default My vaccination worked

    My lab results yesterday confirmed I did get some Antibodies after my Covid-19 vaccinations even though I had RTX a few weeks later since the vaccine pushed me into a GPA flare. I was smoldering though already so it didn't take much. now I am trying to recover from the flare and the treatment.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I have been on mycophenolate for a while now, 1000mg / day, and had two shots of the Pfizer.
    I had my antibodies tested with the Roche semi-quantitative RBD antibodies test, and it came back as 183.
    From what I can gather that is about 10 times lower than would be expected in someone who is not immunocompromised.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Has anyone looked into getting a third Covid vaccine dose? I've read in newspaper articles of people getting them, but not sure exactly how they are able to.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I was able to get an antibody test through Labcorp directly. I think they have an "in-house" doctor who writes the script. You can set it up directly on their website. I thought it was useful for me. As immunized people, many of us are probably generally at higher risk of a worse outcome. However, my thought was that if my antibody levels were normal for a non-immunocompromised person, then what reason would I have to think that the vaccine was less effective for me? While I would still be more cautious than most since I believe I would still be at higher risk of a bad outcome compared to non-immunocompromised recipients, at least I felt that I could check that box and engage with the world a bit more. In the end, my antibody results came back pretty low, I am more focused on being cautious and looking for trials that would enable me to get a third dose.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Quote Originally Posted by Masha View Post
    Bottom line first. My vaccine did not work. The results of my antibody test just came back- negative. My doctors followed the CC protocol. Waited 6 months from Rituxin for first vaccine, after second vaccine waited 6 weeks for next Rituxin treatment. As much as protocol was followed, no antibodies. Drz, like you my doctors really didnít want me to have this test. I guess some patients can go a little bananas with the results. I promised my internist that I would not. It would have been nice to think I had some protection, but between these results and my B cells being non existent, I was told to social distance and continue to wear a mask. I have really only been going for car rides, walks, but not going in to restaurants. As per my doctors orders I agree to continue as if I had no vaccine. People in NC and SC are not masked. Since I used to wear one during flu season, I will just continue. The only problem is that so many people are anti masks, I will be sensitive if someone thinks I am still wearing it only because of covid. But I found a solution, a mask that says AUTOIMMUNE. I will still need to wear a regular one under it. My husband who is 78 also will continue masking, he has a button that says I LOVE SOMEONE WHO IS AUTOIMMUNE. Our neighbors are having a big party with many people who may or may not be vaccinated, doctor said NO! She said she and her husband, a surgeon are passing on a party for the same reason. I know most people are safe, but there is a very small part of the population who is not, and I am part of that small group. I wish that politics and medicine had not got intermingled. For me the best path I can follow is to ignore what I hear on TV and follow doctors orders. Hope and prayers this evil virus will soon be a bad memory.
    Yeah, It's too bad mask-wearing became a political issue. It's such as small thing to ask. People will risk their lives to save others, but yet some are not willing to simply wear a mask. It's too bad that you did not produce antibodies. That is frustrating, but hopefully we will have boosters available soon and they will work on you. There have been some promising results.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I joined a clinical trial sponsored by the Leukemia & Lymphoma Society. I was eligible because I also have chronic lymphocytic leukemia.(also an auto immune disease) They did give us the results of the 1st part of the trial & I have no antibodies. We were told to continue to wear masks & social distance.The trial continues & hopefully, at some point, they will be able to tell us what not having antibodies means & what the solution is. Right now, they are not recommending a third shot. Outside of a clinical trial, they do not recommend testing because they don't even know what not having antibodies means & they don't know what to do about it.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I have had three negative serum COVID tests after being vaccinated in March/April. I did a T-Detect test and that did show a positive response - but you have to pay for the test yourself (is not covered by insurance - at least for me). I am thinking about getting another vaccination - but I have a call in to my Dr to confirm. Thought you might be intersted in this article: https://www.nytimes.com/2021/07/04/h...-vaccines.html

    I just wish there was more research for folks like us. It always feels like I am running a experiment with little guidance.

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Thank you Nancy, I really appreciate the information. After reading your information, I ordered the t test. My doctors do not want their patients to have antibody test. Like I stated previously I had it and like you that test did come back negative. Then my rheumatologist and ent said I have T cells. No test was offered. Glad you told about it. Information is important. After reading The NY Times article, I donít know if I would go for 3rd or 4th vaccine. Food for thought. Again, thanks. Also, thanks to Andrew for providing this wonderful site.

    Masha

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Thanks to everyone for looking into this. I am full of tension about this because no one can tell us whether we really may or may not have antibodies, the test is discouraged, and there is doubt as to whether a result showing no antibodies has truly revealed what is going on in our immune systems. I can't read the NYT article because they want me to subscribe and I don't want to. Sometimes they make important info available without a subscription, and this seems like it should be one of those times.

    Once again we find ourselves having it never stick when we tell people around us about our autoimmune condition. I don't mean family members or close friends, but the otherwise perfectly astute and well-informed people I associate with in various ways. I was at a meeting where everyone, including me, had been vaccinated; at least it was assumed. This was the first in person meeting after many months of virtual ones. No one acted like there was any need to still be careful, wear masks, social distance, etc. When I mentioned it someone said, "well, you've been vaccinated, haven't you?" To which I replied "yes" but I was too pushed out of shape to say anything else, and the meeting had started. This person was one to whom I'm SURE, among many, I had mentioned my health issue in the past as to why I was not attending the farmers market where I've sold pottery for many years. They act like they understand but I swear, it goes in one ear and out the other, and they immediately forget. I am not part of their elite group of fully vaccinated people who have normal immune systems and theoretically are loaded with antibodies against Covid. So I should theoretically be masking up at those meetings, if sitting that close to people. I didn't, because I felt (perhaps wrongly) I would be questioned. I should have done it to make a point. I'm not really worried that I picked up Covid there. But now I plan not to attend any more in person meetings, to make a point, or else hope i will have the gumption to wear a mask and explain why.

    I will see my WG doc in a couple of months and discuss this with him. But I don't think he'll be very forthcoming with information or support, because I doubt he knows any more than anyone about whether or not I might actually have antibodies. Maybe I will ask him about getting an antibody test, and if he has any answer on that, and can provide reasons, I'll be pleasantly surprised. He will probably be glad I got vaxxed, but may say it is up to me whether to mask up or not. Or maybe he'll say I should wear one. BTW, I am on methotrexate and a small amount of prednisone and do not take RTX. I had all my meds upped temporarily due to a flare a few weeks before wanting to get the shots, and ended up following a mixture of 3 different doctors' advice on how long I should wait, how much I should be tapered back down, etc. My WG doc was the one who said I should just get the shots and not worry about what meds I was taking. He isn't the one whose advice I followed. Thanks for letting me unload.

    PS, my profile pic is way outdated, that was about 10 years ago. Been planning to do something about that.
    Last edited by annekat; 07-24-2021 at 02:50 PM.
    Anne, dx'ed April 2011

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    Default Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Good to at least see you starting to get back out. As far as the masks and vaccines are concerned, I’m with you %100. I’ve had both shots of AZ, didn’t have any sort of physical reaction, so I’m acting as if they didn’t work - I don’t really want to know one way or another. People I do associate with have the same deafness, and I’m always afraid I’ll insult someone when they stick their hand out to shake.
    in Australia, we’ve had some city clusters of Delta spring up in the last few weeks, so masking is mandated, which lets me blend in a bit more, but I’ll always remember the rando anti-masker from a couple months ago who actually grabbed mine and tried to pull it off while calling me a sheep. Should really have made a complaint, but I didn’t.
    As for yourself, if it means you can get back out again, just wear the mask and tell people why if they ask. And don’t take any crap.
    Life lessons for all of us;

    Never eat at a place called Maís.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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