Weeks after I received vaccinations
I was tested for antibodies. There were none I was told. So masks are part of the future for me. Has anyone heard of new tests and/or treatments to do what Pfizer has not managed? Is anyone else concerned?
Pfizer shots (jabs) and immunity: Weeks after I... - LUPUS UK
Pfizer shots (jabs) and immunity
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croneleigh
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Not having measurable antibodies is not the whole story - they aren't measuring the t-cell and b-cell responses which are equally as important.
To be honest - I haven't changed my behaviour even here in Italy where we don't yet have a significant level of delta infections. I just assume that there could be another variant sneaking in under the radar that will be resistent to the current vaccines.
Andrew Marr was double vaccinated and still caught it. We have rather dodgy immune systems ...
It is still scary out there. Thanks for the interesting bbc clip, PRMpro. Stay well.
🤩 THANKS for posting croneleigh 💞💞💞💞
🤩THANK YOU PMRpro❣️❣️❣️❣️
👏👏👏👏👏 THANK YOU ANDREW MARR
🤷🏼♀️So, there you go! He’d had 2 negative LFT aka ‘lateral flow tests’ (what do I know, but, to me, these seem a trashy cheapo waste of time misleading sorta test) before a more accurate PCR “polymerase chain reaction test” established he had COVID
This is why vaccinated folk like some of us - especially we who are still officially classed ‘clinically extremely vulnerable’ (OR know we SHOULD’VE BEEN but the Flippin ‘system’ missed us out) - do well to consider shielding ongoing, cause, for instance, in my case:
my antibody deficiency disease (for which immunology has me on IgG replacement therapy & longterm daily antibiotics)
+
the combined immunosuppression meds rheumatology has me on for my Lupus + all my so-called secondary autoimmune illnesses
+
the very early onset of all my immune dysfunction disorders (my Lupus was infant-onset) & my age (it’s a scientific fact that as the decades pass, immoscenescence gradually happens to us all, whether we have immune dysfunction illnesses, are on immunosuppression treatments for organ transplants, have had cancer treatments etc etc or not)
=
I am officially ‘clinically extremely vulnerable’, so I do well to continue shielding etc indefinitely because even though am doubly vaccinated, highest risk patients like me who cannot make antibodies in response to ANY vaccine or treatment ARE INEVITABLY going to end up in hospital if we catch COVID, especially now I’m 67
I’ll be sending this to the folk who still are in my life...have I’ve been TRYING to figure out a short, sweet, effective way explain of explaining this to the V FEW folk I still am in touch with, (ie those who’ve stood the test of time re putting up with my unreliability etc etc), but in response to my verbal attempts at explanation, even most of these precious folk just look at me blankly...& if I’ve emailed them or whatever, I sense complete irritated disbelief in their replies...& this is beginning to really get me down 🤷🏼♀️
SO, THANKS AGAIN 🍀❤️🍀❤️ Coco
Absolutely, absolutely, absolutely!!!!
I despair at the total lack of understanding of even basic science and maths/statistics. Amongst a lot of other aspects of education that to me seem Very Useful Indeed ...
👍HAD got the impression the past 12 months+ has got most folk relatively up to speed on THIS subject, but: no 🤦🏼♀️...it’s as if folk are willfully allowing themselves to see the naked king’s clothes 😕: what a fool I am🙄...even a BIG BRAIN like Andrew Marr had to go through his infection to realise the FACTS of this MATTER 🤷🏼♀️
in reply to PMRpro
Until LUPUS and other AI sufferers are included in specific clinical trials it’s hit and miss. I imagine other groups of diseases are in the same boat. Without more R&D this won’t change. I wonder if government will provide funding for this or if we are in fact the clinical trial already. It has to be a personal decision based on what we think we know but more crucially how we feel about being vaccinated. I’ve had both jabs, the Oxford AZ with some side effects. I am not aware of having had Covid however in January 2019 I attended several international trade shows at NEC with Chinese visitors. My husband and I were quite unwell for several weeks in February and March so who knows. We did not accept the flu jab last winter thinking it best to maintain our own immunity. We may have to reconsider this in the autumn as I note government want boosters for Covid and flu done at the same time. Personally I don’t think I’m having any thing else unless a new dangerous variant emerges. This is just my own uneducated lay opinion and I feel the government and medical emergency response to protecting the public has been great. Now the Immediate emergency is over I’d like so see R&D on vaccines adjusted to account for suffers of life altering illnesses. I’m not holding my breath though 🤔
PMRpro in reply to
It isn't financially viable to do Phase 3 clinical trials for individual disorders that would be meaningful because you do need large numbers. If that were imposed there would be almost no development of any new drugs or vaccines, especially vaccines I'd venture to suggest. The only possible way to finance it would be if everyone got together and shared information rather than competing - and government finance for all new developments is unlikely.
So the post-marketing phase (sometimes called Phase 4) is crucial. Yes, to some extent we are in the experiment - but someone has to be. However, that actually applies for everything, new medications and new vaccines as well.
The trouble is, if you wait for that new dangerous variant to emerge, you are back where you started 18 months ago and always playing catch-up. I have no desire to be back where we were in May last year - and at present, the desire to go to a footy match seems to outweigh the desire for safety ...
in reply to PMRpro
Has there been football !!! 🤣🤣🤣 I accept everything you mentioned I was being rather fanciful on R&D possibilities.⚽️
PMRpro in reply to
Seems to have been something going on with a green background and a load of blokes running around and occasionally falling over dramatically. As opposed to 2 people on opposite sides of a net with a green background and falling over almost as dramatically ...
Have you seen this little feature in the last ST Mag? It’s the bit at the end re trials that made me wonder what you’d think if you read this...have a feeling this may not be legible, but for what it’s worth:
Did you mean to attach a picture or a link?????
They are TRYING to be encouraging...
Page 1
The last section HAD helped me perk up a bit...but the severe birth defects I have due to 5 months of daily in utero exposure to dietlystilbesterol make me ultra sceptical & cautious
rarediseases.info.nih.gov/d...
Page 2
Rats - no, can't manage to read it! What's it from?
Darn it...from June 27 sundar times mag...it’s reporting on COVID forcing us to develop faster clinical trials (eg success of dexamethasone treating COVID) via the Recovery trial, designed by Landry & Horby @ Oxford...will search for a link & add it if I succeeed
Did they think about the fact that these fast clinical trials have been made simpler by the availability of a captive study population? One of the greatest problems is recruitment. Even with Covid, some trails have had to be transferred to places like Brazil to get the numbers.
I got a lot of antibodies w Moderna. I testes because I take mycofenolate . Are you in it?
I take mycophenolate and hydroxychoroquine. I had the pfizerVax.
Maybe ask for another vaccine, maybe a different one like Moderna? Imagine what would happen if you got covid when you obviously have hard time generating antibodies... how much of mycofenolate are you on? Ask uour doctor if you should reduce or stop before you get a booster vaccine. My doctor had me stop methotrexate for 2 weeks before shots. At that time mycofenolate was not yet identified as a culprit to interfere with vaccines... I got mine in February.
I had Oxford, but also had covid last November, I'm tested through ONS and they test for antibodies from the virus and not vaccine. I still have antibodies which amazes me.
I read an article with test trial report from Johns Hopkins Hospital and they say that most with AI along with cancer patients in chemo therapy have no Covid antibodies after two doses of Pfizer or Moderna. They stated that the third booster will change to better antibody condition. However, I have also read in this forum that those with regular Immunoglobulin therapy have very healthy amount of Covid antibodies. And as some of you may know this therapy is rarely given. So it seems we will all have to go for the third booster in September. I dread it as I was so sick with side effects for nearly three months. It was like having the real Covid!
Interesting, cause I’m prescribed long term IgG replacement therapy by my Cambridge Univ hosp immunology team for my Immunodeficiency Disease, and the consultants say it’s too soon to draw any conclusions about whether our IgG serum is helping defend us at all against COVID. They say the hope is that eventually COVID antibodies will come through in our IgG serum, but that’s months away. There is a possibility that the immunodeficiency disease patients who still show ability to make B & t cell responses to infections may be better protected, but I have B & t cells deficiencies. Otherwise, possible treatments that may help antibody deficiency disease patients like me are being trialled eg monoclonal antibodies..
Fortunately, our 2 official U.K. immunodeficiency disease support group orgs we are keeping us very well informed on the science re COVID risk & patients like us.
Hope you react less badly to any future vacc jabs 🍀❤️
Thank you for your good wishes. I just read a communication on this forum within a week ago. I don't remember what it was titled as. But most of them reported high antibody numbers. Mine went up initially than got decreased by 70%. Oh well... All good wishes!
Interesting, but I’d need to see the report. If you do find the report, hope you’ll share it.
Anyway, that conflicts with the official info Immunodeficiency patients like me are currently getting from reputable sources in the U.K, and, although I follow the news on this pretty closely, I have not seen that sort of news anywhere including stuff being shared by patients on our official U.K. support group online forums.
🤷🏼♀️Basically, my feeling is that at the mo, the Rumsfeld Matrix applies to all this 😉:
Rumsfeld during a Pentagon news briefing in February 2002
Rumsfeld stated:
Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns—the ones we don't know we don't know. And if one looks throughout the history of our country and other free countries, it is the latter category that tends to be the difficult ones.[1]
en.m.wikipedia.org/wiki/The...
Somehow I cannot copy and paste the article. Sorry but do please google by typing:Covid antibody for the Immunosuppressed Johns Hopkins Hospital CBS News
You will see there are many articles published on 29th of May and this also includes organ transplant patients.
I never imagined that I would ever encounter Donald Rumsfeld being quoted! :))
😄 good old Donald RIP: at least he has left us one great thing, ie the Rumsfeld Matrix 👏👏👏👏👏
👍THANKS: I used your search terms & found plenty of articles & studies! Eg here’s a link
hopkinsmedicine.org/news/ne...
Here’s an excerpt:
““Given these observations, we feel that the U.S. Centers for Disease Control and Prevention should update their new guidelines for vaccinated individuals to warn immunocompromised people that they still may be susceptible to COVID-19 after vaccination,” says study senior author Dorry Segev, M.D., Ph.D., the Marjory K. and Thomas Pozefsky Professor of Surgery and Epidemiology and director of the Epidemiology Research Group in Organ Transplantation at the Johns Hopkins University School of Medicine. “As the guidelines are currently written, people assume that vaccination means immunity.”
Segev says that upcoming studies will define the immunogenic response of organ transplant recipients and other immunocompromised patients after a second vaccine dose. Other studies will look at the impact of more extensive immune system profiling — including characterizing the immune cells that remember SARS-CoV-2 after vaccination and produce antibodies, or directly attack the virus in response to the presence of the virus — to help guide vaccination strategies for this population.”
So, as far as I can see, the articles you’re referring to aren’t about patients like me on regular IgG serum replacement therapy (IVIG & SCIG) having good numbers of COVID antibodies. Everything we’re hearing from our immunology clinics & our immunodeficiency support group orgs is telling us that COVID antibodies are not in our IgG serum in any significant quantities yet....And what we are being advised is that once COVID antibodies are in good concentrations in our IgG serum, studies will need to establish whether these antibodies can actually protect us much at all. There are quite a few types of immunodeficiency disease, so evaluating & generalising about immunodeficiency patient responses will be quite tricky. For sure, this subject is going to result in lots more studies! 👍💞💞💞💞
PS and thanks to your search terms 🤩 i found this article which ends by mentioning the monoclonal antibodies i referred to in my earlier reply:
Is the COVID-19 vaccine safe and effective for immunocompromised people?
today.com/health/immunocomp...
“Monoclonal antibodies could be a vaccine alternative of sorts, but their protection fades after about three months, so people would have to repeat the infusions, Offit said.”
Hi Barnclown, Great that you found it informative. I mentioned the article earlier as the original post by croneleigh is about not having any antibodies. Indeed you are very lucky to have had leG so regularly if that is what you really need. I am in London and very few hospitals will allow usage of this precious liquid often. I have been given it once a year! It was only about a month ago that I learned that some have this regularly. Rather sad for my case as it was the only thing that had given me a few months of real relief. Now I am indeed on Monoclonal therapy Belimumab (for the last 2 months) and haven't felt much benefit yet after four infusions. Cannot get through to my doctor, not due to lack of my trying. Feel very confused as I have no one to advise me. So I am thinking maybe I should stop it.
Oh paprika: I’m so sorry things are very difficult.! If you only have IgG serum once a year, that most likely means you’re prescribed it at a high Neuromodulation dose for something neurological. I hope your consultant realises you need this again, aspecially as you did qualify for it once & benefited
My IgG serum is prescribed by immunology at a 5 fold lower lower dose than a Neuromodulation dose. My IgG treatment is at an immunomodulation ‘dose’ because simultaneous with lupus I have a bone marrow immunodeficiency disease which means I cannot protect myself from infections at all. I am very lucky to be prescribed IgG long term, because without this I would struggle to stay alive.
The really good news, is that after decades of relying on imported IgG serum, the U.K. can now make its own...this happy news came out earlier this year I hope this helps you get more IgG therapy - this link explains🍀❤️🍀❤️
immunology.org/news/bsi-res...
Thank you very much for your sympathy and yes, I have read that UK will be harvesting its own for leg which is really brilliant for those in need. No doctor has ever mentioned anything remotely about neuromodulation dose... we are given barely 20 minutes consultation in London and for some it is every three months!This is a case of post code lottery! 😂 Thanks for the link!🙏
🤗You’re v welcome! Am v much feeling for you! &, as much as another can, I v much relate cause I had to wait several years & get pneumonia breaking through imm7nology’s daily long term antibiotics before i FINALLY met my Univ hosp’s immunology IgG panel’s criteria for going on long term imm7nomodulation doses of IgG..
If you’re interested, here is the link to the U.K. Guidel8nes for prescribing IgG...it explains the diff types of dosage etc. I’m guessing your IgG was prescribed by a neurologist?
gov.uk/government/publicati...
recently, our imm7nodeficiency disease support orgs are warn8ng us that so much IgG is being given to COVID & Long COVID patients that our supply is endangered...this is literally a life/death issue for patients like me...so an IgG shortage is extremely scary...🤷🏼♀️❤️🍀
I had Covid and have ming Covid and no antibodies. As others have said it is all about the T cells. Many autoimmune don’t show antibodies probably because of our yearning to always be different. I am going totally Japanese on the mask thing as don’t want coughs n colds or other diseases. They felt very sensible wear when everyone had the cold. Helped protect against pupils with the green nose slime.Have to find the balance for you.
As someone who can't have the vaccine for medical reasons I don't think that it's being made clear enough to people with compromised immune system s that the vaccines are not going to have the same efficacy and that the reality is that even with the vaccines people with compromised immune system s are going to still be at a higher risk and need to take precaution s
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