sorry but covid vaccine again: today I have had... - MPN Voice

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sorry but covid vaccine again

kevmince profile image
16 Replies

today I have had clinic and I asked about the 3rd primary dose , and I was told by the specialist pharmacist , that my consultant has decided that I didn't need 3rd primary dose , just a booster! ( I have ET and am on Hydroxy)I explained that was in opposition the advice both blood cancer uk and mpd voice have published , and also many other people with my diagnosis are getting 3rd . I also pointed out that I had not even been given access to a booster, I have only had one because I am over 50 and took myself to walk in vax centre 6 months after 2nd jab. Pharmacist said she will go back to double check with consultant , but I must admit to being both angry and upset at this whole fiasco , yes I have had a jab due to my own efforts and being armed with info charities have provided. I feel dismissed and let down

apologies for rant

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kevmince profile image
kevmince
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16 Replies
mhos61 profile image
mhos61

You have my total sympathy; I know that anger and frustration, as I’ve had to fight hard to be recognised as both CEV and for access to the Third Primary Dose Vaccine, and it makes you feel as though you’re a nuisance.

Presumably, at 50 you’re still working, which again, puts you at additional risk. I can’t understand why healthcare professionals wouldn’t err on the side of caution where there is any possible doubt.

Maybe you could email the haematologist with your concerns and attach the appropriate links to MPN Voice and Blood Cancer UK.

EPguy profile image
EPguy

If your shot would be Pfizer the booster and 3rd shot are the same dose, 30mcg. If it is Moderna the booster is 50mcg, 3rd shot is 100mcg, both are more than Pfizer. I don't have info for AZ, but you can ask your consultant, AZ is measured differently.

By any name the extra shot is good to have.

Jynx93 profile image
Jynx93 in reply to EPguy

When having my 3rd jab (Pfizer) I was told by the doctor that it was a full dose and not a booster, they are different. People with certain health conditions get a full dose apparently

Coloured picture, black text
EPguy profile image
EPguy in reply to Jynx93

The picture you have is cut off. Are there more details in it?

I have info only for the US. I expect the numbers are the same for Euro/UK but it might be different.

This site has an excellent chart explaining it well. In the US it's now called Booster vs Additional dose. We MPNs get the "additional dose" Most folks get the booster.

This chart adds new info to me about the JJ. So Pfizer and JJ have the same dose for all adult shots, Moderna is the only one that is different for Immune compromised vs other adults.

AZ has a similar tech to JJ and might also use the same doses, but there is no info on AZ in the US.

dshs.texas.gov/immunize/cov...

Boost vs additional shot
Jynx93 profile image
Jynx93 in reply to EPguy

Thanks for your reply. Maybe it’s different in each country. This was the bottom part. As long as we get extra protection it doesn’t really matter what it’s called if it improves our immunity.

Colour picture, black text
EPguy profile image
EPguy in reply to Jynx93

Thanks for the screenshot. It seems consistent with the US info here. MPNs get same extra/3rd dose for all vaxes at this stage. It seems somehow UK NHS has made it so confusing. In US it seems less an issue, I don't know why.

Jynx93 profile image
Jynx93 in reply to EPguy

The UK always makes everything confusing, the Government have no idea what they are doing

ET500 profile image
ET500

Yes all confusing. There is no difference in dosage if you get Pfizer, but it is recorded on your records differently. When recorded as 3dose you will get another note in 6months to get a booster.. which at this moment in time is not the same if recorded as booster.. Who knows what will be the situation by then 🤷‍♀️.

EPguy profile image
EPguy in reply to ET500

I understand now some of the complexity in UK vaxing. UK is already planning for a 4th shot (what ever it will be called) for MPN's etc. US has not even started that discussion, so we're behind there.

MCW22 profile image
MCW22

Hi kev, now that you've had a jab you need to contact your GP and get them to put on your records that the jab you just had was a 3rd dose so that you will be able to get a booster in 6 months. Again arm yourself with all the info from blood cancer UK, NHS and government websites. Be insistent, you are right, they are wrong. Tell them so. You may find it easier to put it all in a letter addressed personally to your GP. Don't give up. I too had to fight for mine and at times I felt like giving up but I carried on and got there eventually.

Carol

Jynx93 profile image
Jynx93

That’s awful, I hope you manage to sort it out and get your 3rd dose that you are entitled to. I wonder if it makes a difference what area of the UK we live in.

kevmince profile image
kevmince

thanks to everyone for your replies and support. Again due to info from here I knew to go to vax centre which was giving out pfizer, so I have had the right dose , and I know now that whether it is called a booster or a third dose it somewhat academic, but if in 6 months time they recommended a booster after third dose I can see it causing more problems and I have to fight again.In the UK it does seem very much a postcode lottery in access, in some areas the hospitals invited them in and did jab, other people have appealed directly to gp and got jab that way, however where I live the vax is all done in centres and the gps don't do them at all, so they pretty much just shrugged and said they wouldn't get involved unless they heard from consultant .

I will wait and see if I hear back after query to clinic

Wyebird profile image
Wyebird

Hi if you have the Pfizer booster it’s equivalent to a 3rd dose. If you have maderna it’s half strength.So if Pfizer is offered I suggest you take it then you have 6months ( for booster ) to persuade them otherwise

Brendaf profile image
Brendaf

Hi kevmince I too had lots of tooing and throwing with the different people. I did eventually got my third dose and discovered the problem seemed to be the fact that they could not put it down on record (computer) only as a booster but she was able to add a note and also recorded on my little card that it was a THIRD dose. Hope this helps. I’m in Liverpool.

Lucycourt profile image
Lucycourt

oh that does sound very upsetting for you -I hope you contact consultant and be very kind to yourself . me age 79 ET Jak 2 Hydrox- had all jabs . as ok as I will ever be

kevmince profile image
kevmince

I have finally received written confirmation from hospital that " patients with MPNs have been pushed into 3rd primary vaccine category " which is worded a bit grudgingly , particularly since it states we weren't specifically mentioned in government advice, even though that advice itself said it wasn't a comprehensive list of conditions; but any way I now have a piece of paper should we need 4th dose or further booster

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