Ineffictiveness of Covid vaccines for the immunocompromised.

I am ECV due to being immunosuppressed by medication taken for Rheumatoid Arthritis.
I was lucky enough to be contacted by my Rheumatology consultant the day before the Booster started being administered at our local Vaccination Centre and she told me to go straight away and have it before the rush.

Only found out by NHS letter about 4 weeks later that that was a 3rd Primary Vaccine and Booster to follow in 6 months.

For about 6 months I have been making enquiries as to how I can check my antibodies so I could assess my risk of getting Covid. and have ben sent from pillar to post.
Wandering around Bath I found a shop that did all sorts of allergy tests, pre travel and post travel tests etc and low and behold antibody tests.
Apparently there are two types of test , one tells you if you have had Covid and have antibodies and the other whether you have produced antibodies after the vaccine.

They were very knowlegable and both the people I spoke to were trained nurses and one had worked in a Rheumatology Dept. They knew all about the immunosuppressants I was on and the test was quickly done via a full blood test (not a finger prick). I paid £45 and received the result 2 days later.
I have produced 18,000 antibodies. Anything 50 and 800,000 is supposed to be a positive result.
Now all I have to work out is am I on the low end of immunity or is 18,000 enough antibodies!!
Anybody know the answer?

Both you and your husband

millymouge

MerylStreep it was the 3rd vaccination I was referring to. Tend to refer to it as a booster. We were called for it quite unexpectedly

Milly it isnt the same thing.
Unless I’ve misunderstood and you are immune suppressed.

I am not trying to derail the thread as I know many people need to know about the third vaccine if you are immunocompromised as it is important.
I was listening to something on the radio last week and I heard that the new capsule drug for Covid has now been tested and is out on the NHS. It is called Molnupiravir and can be taken at home. It would be prescribed by the GP at the first sign of Covid diagnosis. They said that in most cases it would prevent hospitalization happening. This is not to say that people should not get the vaccine but with that drug it could help many people.

MerylStreep it was the 3rd vaccination I was referring to. Tend to refer to it as a booster. We were called for it quite unexpectedly

Thanks Marydoll!

As I have already said, they are the same vaccines, but managed differently.

•Ideally, the third primary dose should be administered eight weeks after the secondary vaccine. (That hasn't happened for many).
•If you had AZ, you must have Pfizer or a full dose of Moderna for your third primary vaccine.
•I believe only a half dose of Moderna is given as a booster. (Of course I may be wrong, but I have done a lot of reading about this.
•A further booster is required in six months and this requirement should be coded in your clinical record.

The AZ has not delivered the goods for many of the immunocompromised, which is why is recommended that should not be administered for the third dose.

Bluesky, I hope this clarifies things for you.

I’m not clear on this, is the third primary a different formulation from the booster? They tell us the booster is the same, only you get Pfizer whether you had it before or not.

Iam, I know exactly how you feel! I haven't spoken to my GP, since lockdown began. I had another heart attack, because no-one was monitoring my heart condition, related to my RA. I feel abandoned!

I know it is untrue, but I can't help they are just waiting for the CEV to die, that would certainly ease the burden on the NHS.

Fanny, so sorry to read what a tough time you and your husband are having.

I’m feeling quite isolated from the previous ease in seeing or talking to my GP or Rheumatology department about managing the implications of being CEV. I won’t give the boring detail but it begins to feel that we learn much more from threads like this - thanks to everyone contributing.

I plan to phone rheumatology today. My recent bloods were concerning so we’re re-done a week ago. I’ve heard nothing so assume they were no longer concerning. I will also ask if I can have an antibody test.

The other issue for me is contact with young grandchildren. They’re in school and nursery. I d0nt want to return to only seeing them over garden walls but …..

Fanny, I was only due to have my dose yesterday, but managed to get it earlier, so it can't be too late. Your husband's consultant knows best, so ask him!

We just need to keep battering away and continue to shout very loudly, the onus is on us to raise awareness. Even if only one life is spared, then it will have been worthwhile!

I'm so grateful to the immunocommpromised posters on here, who have contributed valuable information to the various threads.

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.

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

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.

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.

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.

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.

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.

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!

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.

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

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!

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.

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.

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.