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Ineffictiveness of Covid vaccines for the immunocompromised.

(98 Posts)
Marydoll Sun 21-Nov-21 19:40:12

There have been a few discussions recently, where some posters insisted that there was no such thing as a Third Primary Vaccine for those who are immunosuppressed, it was just the same as a booster. It isn't.

I have just read an article in the Sunday papers, which reported that a number of immunosuppressed patients in England and Wales are seriously ill in hospital with Covid, because their GP had no knowledge of the requirement to get a third primary dose, nor the urgency of needing one, rather than a booster.
Some patients were found to have had little resistance to Covid, despite having had two vaccinations. In other words, for them the vaccine was ineffective.
As someone, who is immunocompromised, I was horrified to read this.

welbeck Sun 21-Nov-21 19:47:48

i agree though not surprised.
neighbour near here should have had 3rd dose in august.
is bed-bound. impossible trying to get it, despite nhs letter saying contact GP. did so, told it's the booster, you have to wait.
one gets tired of arguing.
now district nurses are due, with booster.
doubt she will ever get the missing dose.
she has complex multiple morbidities, extremely vulnerable, immuno-compromised.
all this what you wrote OP was predictable. due to lack of GPs being aware of what wider nhs advice is, or actioning it.
so unnecessary.
take care.

Marydoll Sun 21-Nov-21 20:10:47

welbeck, I too have multiple comorbidities and am immunocompromised. It's scandalous , what has happened. I managed to get the third Primary by asking when my husband went for his booster. Thank goodness, the receptionist on duty was clued up and called for the person in charge.

A week later, the up to date information appeared on the NHS Inform website.
Previously, when I tried to find information about it, my GP practice said it was nothing to do with them and the agent on the vaccination helpline, told me he hadn't a clue what I was talking about. It was a actually my RA specialist nurse, who advised me to ask for it.
How many immunocompromised patients out there are still in blissful ignorance?

I hope your neighbour gets the appropriate vaccination. If the first two were AZ, the third must be a full dose of Moderna or Pfizer. At least I am able to fight my corner, what about those who are too vulnerable or incapable of doing so? 😡

Calistemon Sun 21-Nov-21 20:16:40

All I can say is - oh buggeration.

No-one seems to have a clue.

millymouge Sun 21-Nov-21 20:30:34

I had an email to tell me that DH and I were due our booster almost exactly 6 months from our last vaccination. Made an appointment by text and had the vaccination 48hours later. We had the Pfizer again

MerylStreep Sun 21-Nov-21 20:37:56

Millymouge
MaryDoll isn’t talking about the booster. This 3rd vaccine is something completely different.

Iam64 Sun 21-Nov-21 20:45:02

Thanks for starting this Marydoll. I had my booster 6 months after my 2nd jab.
A couple of weeks later, my rhuematologist sent me a copy of her letter to my GP. The letter states I’m extremely clinically vulnerable and should have my 3rd jab 8 weeks after the 2nd. I states if I’ve recently had my booster, this should be counted as a 3rd injection. I must be give a booster in 6 months.

Like you, I read today that many of us with compromised immune systems probably had low or no antibodies because we waited 6 mo the, not 8 weeks to get what is now identified as a 3rd necessary injection. The nhs site indicates the immunosuppressed can request antibody testing. When I checked this out, it states antibody tests are Only available for NHS workers. Its possible to buy them privately for about £60.

With Christmas meaning more contacts with others, is anyone considering paying for an antibody test?

Calistemon Sun 21-Nov-21 20:56:50

I think they should be freely available for those who are clinically vulnerable.

Marydoll Sun 21-Nov-21 20:59:55

MerylStreep

Millymouge
MaryDoll isn’t talking about the booster. This 3rd vaccine is something completely different.

Thanks Meryl, I should have made it clearer, despite suspecting people would come on taking about boosters.

Iam64 Sun 21-Nov-21 21:01:44

I agree Callistemon. I plan to phone my designated specialist rheumatology nurse and ask her if I can be antibody tested. A friend who isn’t CEV is part of an Oxford Uni research group. She was found to have no antibodies when tested a month before her booster. She is 70 and her husband in his late 60’s is in treatment for cancer.
I also question whether spouses/partners of CEV should be prioritised.
A work colleague got Covid 9 months ago and remains in hospital. That individual was a fit 50 year old with no existing health problems

maddyone Sun 21-Nov-21 21:02:39

I read about this Marydoll. I hope you’ve managed to get your third vaccine, and go on to get the booster too. Apparently the third vaccine for people who are immunosuppressed makes a big improvement to their resistance levels.

Marydoll Sun 21-Nov-21 21:03:07

Iam, your clinicians are certainly on the ball! The JVC stated that the third Primary should be given eight weeks after the second. Unfortunately that information doesn't appear to have been efficiently disseminated.
I got mine six months late.

Calistemon Sun 21-Nov-21 21:08:15

I'd not heard of it until you mentioned it on the other thread, Marydoll.

I will ask him (but am not sure that he will know).

Another point that seems very odd to me is that one of my relatives, unvaccinated and who must be immuno-suppressed, caught Covid in hospital but was symptomless.

Pammie1 Sun 21-Nov-21 21:11:21

I had the third primary vaccine in October, although it was late. I did contribute this info to one of the threads to which you refer, but there were still those who insisted I was wrong and had, in fact, had the booster.

Hetty58 Sun 21-Nov-21 21:17:40

Calistemon, it seems that some people get a mild infection, others a severe illness, for reasons largely unknown. I did know about the third jab, as my niece needed it, but, at the time, nobody seemed to know what I was talking about.

The system doesn't work that well. I've had my two jabs and booster, yet I keep getting texts - telling me to book my booster!

Iam64 Sun 21-Nov-21 21:32:16

Mary doll yes but I got the 3rd as a booster, six months after the second. The clinicians are learning as the disease morphs and changes. I feel lucky to be in the uk

Hetty58 Sun 21-Nov-21 21:45:34

As the vaccine provokes an immune response, those with a compromised immune system may not react effectively to it. So it's not a case of 'ineffectiveness' of the vaccine itself. I think antibody testing should be routine for anyone needing a third dose.

Grannybags Sun 21-Nov-21 21:49:41

I have just had my booster but the nurse checked that we were all there for our booster and not a 3rd vaccine.

I was quite impressed that they knew the difference after reading your previous thread!

Marydoll Sun 21-Nov-21 22:12:47

It has been found that the AZ has only been 40% effective in some patients, some have had no protection at all. Whereas, Pfizer and Moderna have provoked a better response, This is the reason that AZ in not recommended for the third primary.
I found this out after taking part in a Zoe webinar about immunosuppression and the Covid vaccines. It was quite unsettling, to say the least, to listen to the scientists.

Some of the clinicians taking part were so concerned at the delay and failure to disseminate the information to GPS, that they were vaccinating their patients in hospital and at their clinics.

Missedout Mon 22-Nov-21 00:06:02

This is a timely thread for me. I tested negative for Covid (Spike) antibodies 4 weeks after 2nd vaccination (AZ) then had the 3rd Primary dose (Pfizer) just short of 6 months later (4 weeks ago).

A few minutes ago, before looking at Gransnet this evening, I ordered another Covid spike antibody test kit (£45).
With luck, I should hear by the end of this week if I have developed any antibodies.

My results may be a bit skewed because I have antibody replacement therapy and my latest batch, from blood plasma, would have been collected around Autumn 2020, so could also contain some Covid antibodies.

I have also had a letter from my immunologist to tell me that if I should end up in hospital with Covid, I must tell the team treating me to contact my immunology department. I gather that Ronapreve (effective monoclonal antibody treatment - given to Donald Trump) is only given to sick patients who have no antibodies. My immunology team believe that the very immunocompromised like me may show a faint antibody response as the result of therapy and want to ensure that I am not refused Ronapreve because of my treatment.

I know I am lucky, my treatment keeps me relatively well. I recently changed the way my treatment is administered and have had a lot to do with my immunology team as a result. I wish I had realised sooner how helpful they could be. I was asked why I hadn't been in touch with them about my struggles to get the 3rd Primary - they would have arranged it, especially as so many of their other patients were also struggling - I was not alone in that.

However, although I have said I am lucky to stay well, I don't feel lucky. I am hopeful that some sort of 'Freedom Day' will be on offer to all of us immunocompromised. Certainly I have seen that monoclonal antibodies appear to be very effective and a recent trial (PROVENT) is making news at the moment. I just hope that we can access it soon and that some lessons have been learned from the 3rd Primary dose farce.

Marydoll Mon 22-Nov-21 01:12:09

Fingers crossed for us all, Missedout.

One of the primary reasons I am immunocompromised is due to the fact that I inject myself weekly with Tocilizamub.
The irony of it is that is has been found to save the lives of patients in Covid ICU, resulting in a world wide shortage.
I'm intrigued by the fact that the medication, which has made me ECV, could possibly help if I becoming infected with Covid.

FannyCornforth Mon 22-Nov-21 06:03:36

It was me who started the other thread about the third primary vaccine.

Last week my husband’s Respiratory OHT explained that it is very different to the booster, despite his Rheumatology team saying otherwise.

Like Marydoll my husband has co-comorbidities and is immunosuppressed for several reasons.

He’s also been in hospital four times in a year with pneumonia, after catching Covid despite shielding.

To be honest, I’ve totally given up now with the third primary thing.

I just hope that things get better over the next few months, and that HCPs get more clued up.

In fact, I’m feeling totally worn down by the entire set up.

Marydoll Mon 22-Nov-21 07:01:22

Fanny 💐 I'm sorry to hear, you and your DH, have had such a struggle.

I started this new thread, after reading about the consequences of not having a third primary vaccine dose and to raise awareness for those immunocompromised, who do not know about it. The other thread was derailed (not deliberately) by posters, who had not read the OP, and came on to post that they had received their boosters, so important information was being missed.

There were a fair number of posters on previous threads, who insisted that the third primary and booster were the same thing. They are the same vaccines, but they are used in different ways and in some instances, a different dosage is given.

What surprised me were the posters, who were unaware of the fact that their medication made them immunosuppressed, until they received an invitation for a third dose.

FannyCornforth Mon 22-Nov-21 07:08:53

Thank you Maryx
To be honest, I suppose the ‘booster posters’ aka those who didn’t even read the titlehmm provided a bit of light relief!

FannyCornforth Mon 22-Nov-21 07:21:53

Regarding ‘the letter’.
When I spoke to the head Rheumatology Nurse, he checked DH’s records and confirmed that yes, he was eligible for the third primary dose because he was taking a high dose of steroids when he had the first two vaccinations (he had been taken off biological treatment at this time, but is back on it now).
But the Nurse said that it was now too late to have the TPD.
Is this right?
What should I have done?
Do you think that they were actually contacting patients?
It’s sooo confusing.

He’s seeing the respiratory consultant tomorrow, so hopefully she will be helpful🤞
Sorry if I’m rambling, I’m feeling a bit fraught!

Thank you so much for starting this thread Mary, we really do need to raise awareness of this.