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Update on Covid vaccinations for immuno suppressed

Hi All in UK,

Today I had my 4th Pfizer jab.The NHS seems to have got itself in a pickle regarding the recording of vaccinations for the immuno suppressed .In September 2021 JCVI referred to the need for an extra dose for those with certain medical conditions and referred to the Third Primary Dose .However there was then no facility to record the third dose as third Primary so it was called a booster.

Following a tip from a previous post on here in early January 2022 I called 119 option 4 to seek a correction to my personal record;I was promised a call back within a time frame and that after a big delay has now taken place .After much interrogation on the phone and having to quote dates ,location ,manufacturer and  batch numbers of previous vaccinations, it should now record as:

Dose: One or 1

Dose:Two or 2

Dose: Two-Two or 2-2

Dose:Booster

My NHS app though showed 1, 2,  2 (not 2-2) after the update and eventually hopefully will have a booster added to it.

Upon check in today at a walk in centre  managed by Procare on behalf of NHS  they could not locate my Dose 1 but luckily I had a record of location type and batch number and thankfully I was also armed with a consultants letter.So different databases seem to exist!

The system is still imperfect;you have to be well armed with evidence and be prepared to explain the situation.

Regards

John

I had a similar situation when going for my 4th. My NHS app showed “3rd of 2” so obviously a bit non-sensical.

However nobody was looking for a reason not to give a dose, so it was easily worked through and I managed the triple-crown of vaccines with a Moderna booster over my previous AZ and Pfizer doses!

David.

Hi David and All,

I have just read in the press that within a few weeks JCVI is likely to announce a second booster for immuno- compromised meaning this for us it brings jab total up to 5.The normal gap between a jab and the next is 3 months I understand.The thinking is that a booster strarts to wane after a few months in the extremely vulnerable.

For anyone whose record of vaccinations is not up to date/incorrect on the NHS app, certainly for England,( Wales,Scotland and NI might be different) call 119 option 4 to request a correction.

John

 

Hi John, David and all,

Thank you for the latest update regards to the Covid vaccination. 

I received a letter on Friday to ask me to go for the 3rd vaccine = 4th one. if I hadn't already received.

I mentioned to my friend when I had the Booster I received no paperwork card etc 

how would I get proof of that !!! my friend asked me to get the NHS app I said I have tried but 

my phone won't download she suggesting going on line register that way I can then view and print off

the vaccines I have received etc and it also connects to your GP (UK) 

Type in             https://www.nhs.uk/nhs-app add in the details includes your NHS number and 

you will get all the information you require and more besides. 

when you have set a password etc given a phone number everytime you log on the send you a 6 no security code to add in. 

I Also went onto the support@bloodcancer.org.uk   tel   0808 2080 8888Antibody and antiviral treatments for people with blood cancer it has information if you receive a positive covid test. including Sotrovimab, Paxlovid, Remdesivir and Molnupiravir.  the pages explain the UK how to get assessed etc for the new covid treatments fast access to covid medicines for people with blood cancer. aged 12 and above who test positive for covid . 

Hope this helps

Patch 1

Patch,

In my experience, they are not looking for reasons to deny people vaccines. You can probably just show up, and take any piece of medical documentation you have - your most recent clinic letter or whatever. Did you get one of those Emergency PCR test packs? That would do it too.

I took all that, and it stayed in my bag. They didn't need to see anything.

Worst case is you book an appointment and they won't administer. Unlikely, but nothing except an hour of your time lost.

If I were you I would just book an appointment, and turn up with whatever documentation you have to hand.

David.

Hi David, 

 

I'm sorry for the late reply. 

 

As you have pointed out they aren't looking for reasons to deny people having vaccines. its just making sure

we are all made aware of what cover is there for us and this site is certainly brilliant for that. 

I've had all four now. I haven't received the Emergency PCR Test pack.

Thank you again 

Patch,

 

 

 

 

Hi all. So I had my 4th Covid jab early January this year. I then caught Covid late February. Not too poorly (though the fatigue lasted probably a good 6 weeks) and I was lucky enough to access the monoclonal antibody treatment. 

But now I am receiving text messages to go get a 5th jab. Is anyone in the same position. If so how do you feel about a 5th jab especially if you have had Covid? 

Hi

I tested positive on Christmas Eve, having had what was re-classified as my 3rd primary dose at the end of October. Not too poorly - I had a cold in February which was worse. I had my first booster at the end of January, and had another booster on Friday last week. I was a bit spaced out for 12 hours after the one last week but not too bad.

About 3 weeks ago I went to party; the next week 6 people I had talked to tested positive; I did 3 LFTs over 4 days after I heard that they had tested positive and was clear. I'll go on taking the jabs.

 

Me too Alastair - I don’t see the downside.

I have my next later this week. A simple vaccine is much better than a large dose of COVID. My wife still has not regained her sense of smell more than a year later - this is not to be mucked around with.

David.

Hi All,

The Blood Cancer UK site says that anyone who has blood cancer should seek a second booster or a 5 th one as long as it is at least 3 months from the previous one -this is to give protection against a potential summer wave of Covid.So we dont have to wait a full six months from the 4th one.The thinking is that over time the protection from the previous jab does wane .I found that I had virtually no side effects at all with the 3 rd and 4 th ones all of of Pfizer.

I have my Vitamin D monitored on a regular basis and still take 4000 iu daily in order to maintain it a a good level-at one stage in the past I was found to be deficient.

In mid May I will be seeking a 5 th one -Covid is still around us.

Best wishes

John

Hi John

NHS Wales sent me an appointment for my 5th jab (second booster) without me doing anything. The date was 3 months and 2 days after my first booster.  

Hi All, 

Thank you all for all the updates

Its very reassuring that some of us have contacted Covid-19 and have survived... as pointed out Covid-19 is still around. 

I've also received a text to ask me to go for a 5th Covid-19 booster I go tomorrow my 4th was 19.01.22 so takes

me up to 15 weeks... like everyone here I will carry on having the vaccines as offered.

I've spoken with friends and family who haven't had an offer of a fourth vaccine!! one friend suffers with

Emphysema, Diabetes and has survived Pneumonia twice before Covid-19. .

Take care everyone 

Patch

 

 

 

 

Yes, I saw my specialist a few days ago and he said that recently the advice from JCVI and the Green Book became very specific and that those deemed immuno suppressed should have the 5th one as soon as possible after 3 months from the 4th.We need to have our immunity really up to date as over time the vaccination protection wanes.

John

Yesterday I received the results of my latest antibody test (measuring spike protein antibodies - these are produced by both the vaccine and infection with COVID).  Interestingly, they are 3.5 times higher than previous tests, which were done last May and last December. This is interesting, I think.  Not sure if I’m surprised or not.

In May 2021, I was 6 weeks post my second dose. In December, I was 3 months post my third dose, and had just got over COVID itself (about 14 days since testing positive so it’s possible the full antibody production from infection hadn’t kicked in then). My COVID infection was mild but symptomatic. The antibody levels for both 2021 tests were almost the same - let’s call them 1000.

My test this week was 3 months after dose 4 (and 4 months 14 days after testing positive for COVID). The antibody levels are over 3500. So that’s 3.5x where they were 3 months after dose 3 (and it’s now a similar time after dose 4), and they seem to be enduring.
 

Obviously I can’t tell if the infection or dose 4 was responsible for this big increase and the sustained level. My guess is it’s both.  It’s also entirely possible I’ve come into contact with Covid since, maybe several times (I’m not shying away from crowded places) which would probably trigger antibody production. I’m in TFR and undetectable, and obviously not immunosuppressed. I’ve been offered dose 5 but am not inclined to have it, at least not now - it doesn’t seem necessary.  Will discuss with my CML consultant in a fortnight.  A shame we don’t all know what our antibody levels are as that would help with decisions.

I don’t take vitamin D supplements other than in the winter - but then I’m outside a lot so I suspect my vitamin D levels are pretty good.  They were the last time they were measured.