A little light shed on the confusion of 3rd/booster jabs.

[PMRpro]

A friend just posted this on the LupusUK forum and I thought given all the posts we had you might like to read it:

bloodcancer.org.uk/news/how...

The old story of bevys and breweries springs to mind!

[DorsetLady PMRGCAuk volunteer]

Yes it does…disconcertingly isn’t it?

[Charlie1boy]

Thank you for posting this information. I’m afraid it came as no big surprise. Why do these politicians always try to treat us as idiots? We can’t believe a word they say.Best wishes

Paddy

[Lookingforideas]

I clicked ‘like’ , but like isn’t really appropriate is it? I do like that you’re highlighting it and making people aware but really, as you alluded, P ups & breweries are the only way to describe it. I have been chasing a 3rd jab since I read the post on here weeks ago about the parameters for having it. I’ve been trying (politely) to wade through the barriers of hard pressed GPs & receptionists to establish whether I am or aren’t in the category of requiring one and eventually bit the bullet… got out my food diary from the period and added up my doseage in the 3 months prior to my first jab on 9th Feb 20. The minimum dosage in the 3 months prior to your first jab, for qualifying for a third dose, is 280mg (4 weeks at 10 Mg = 28 x 10 = 280mg) and mine was 408 mg, so I chased it up (from Spain for 7 weeks🥴). Anyway, eventually I got the right Gp who passed me to the right admin person, who yesterday (after chasing) sent me the necessary ‘authorisation’ letter and directions to the walk in 3rd jab clinic about 6 miles from home. As I’m seeing my Neurologist (beyond there) at the hospital tomorrow morning, I’m going in there, letter in hand, on my way home … sleeve rolled up all ready - only 7 months after 2nd jab. Better late than never right ! So I guess I have to cancel my booster which was booked for the 24th November - earliest I could get when searching online from Spain about two or 3 weeks ago 🙄🙄🙄. Shambles???? 🤷‍♀️🤦‍♀️🙄

[Nextoneplease in reply to Lookingforideas]

Sorry you’ve struggled so much - sadly, as you know, you’re not alone…..I really don’t understand why a system that seemed so well organised between January and June, seems to have fallen apart so quickly 🤷‍♀️

[Rosbud in reply to Nextoneplease]

We didn’t have A problem, I had message from NHS to say 3rd primary, next day message from GP , booked same day , all done and dusted in A week , exactly the same as for first 2 , I think the confusion comes from people trying to book before the get the message from GP , was told by DR at the vaccine centre it’s easy for the admins to change system to show you’ve had 3rd primary x

[Nextoneplease in reply to Rosbud]

Hi Rosebud, I’m pleased your surgery seems on the ball 👍

But neither my husband nor I have heard from the NHS and when I asked at the surgery I was told a) they hadn’t decided on the criteria yet (although these are national), then subsequently b) they were only doing nursing home residents, then c) they hadn’t heard of a third dose for immune compromised people, and so it went on……

Eventually I managed to get a letter from the rheumatology dept (after I’d explained the criteria to them and they’d ‘had a meeting’), and I just went online for hubby.

No word from surgery……it seems so variable which is why we have to push……I’d much rather let them do their thing, but I don’t feel it can be relied on at present 🤦‍♀️X

[Rosbud in reply to Nextoneplease]

That’s awful, I think if it had been our GO practice we would have been the same but they are in A group and the DR in charge seems to be on the ball , very wrong when they all had the relevant info in September x

[PMRpro Ambassador in reply to Lookingforideas]

I think the gap to the booster here in Italy was nearly 7 months for me as I was very early to get my first jab. However - we just have a 6-month booster for everyone with no specific earlier option for us. I think elderly and very vulnerable patients were called first. But our infection rates remain low everywhere except my regionalthough they are creeping up!!! And it is about to be xmas market and ski-season. Hum!

[Bachfugue in reply to Lookingforideas]

Never knew about the 280mg total for three months preceding the first jab. Time to get out my dosage diary …..

[Lookingforideas in reply to Bachfugue]

I did that calculation myself from the bit in the document that says … equal to or more than 10mg a day for 4 weeks in the 3 months prior to the first vaccination… so 28 days at 10mg is 280mg. I spoke to a GP about it on Friday. She said yes that’s correct & she’d send a note to the admin/secretary for action on Monday. I called on Monday afternoon and was told the lady would call back. I called again on Wednesday and was told she’d call back. She did this time, and started to say she’d have to work out what dosage I’d had which might take a while … I told her then that I’d calculated my exact dosage from my food diary at 405mg and she audibly shuffled some papers for a minute and then said right, that sounds correct, you should have had a letter. Then she emailed me the letter right away. I have no doubt whatsoever that there’s loads of people who should have had a letter, but havent 🙄🙄.

[Nextoneplease in reply to Lookingforideas]

I agree. My husband, who isn’t CEV but is nearly 76 and had his second dose seven months ago, was told by our surgery that it “wasn’t his turn yet”. So I got online and booked him a booster at a walk in centre - I’m sure many people are still waiting. My third primary dose was a whole other saga but I got it finally….

What infuriates me is politicians imploring us to ‘come forward for a booster’ - as though we were resisting it!!!

[PMRpro Ambassador in reply to Nextoneplease]

Well obviously it is all our fault ...

[Lookingforideas in reply to Nextoneplease]

I’ve literally just had the 3rd one and sitting waiting for the prequisite 15 mins. Apparently the NHS app hasn’t been ‘sorted’ to register a 3rd one yet so they’ve given me a card - which has a batch number on it but looks like it’s a first dose on the card 🙄. I hope they’re not looking for a third one or booster for travelling before they sort it out🙄

[Nextoneplease in reply to Lookingforideas]

I didn’t even get a card 🙄 Was happy just to get the third dose at the time…..but as you say, proving it for travel purposes could well be a problem!

[Bcol in reply to Lookingforideas]

I didn't get a card and was told it wasn't needed as I would get it on my NHS app. They were correct, it appeared later that day.

[PMRpro Ambassador in reply to Bcol]

I was handed my new print-out saying I'd had dose 3 and told I would be able to download my new Green Pass after about 4 days, My GP printed it out for me - no smartphone and haven't conquered the printer yet - that's scatty Italy for you. If it goes on a computer, it works

[Lookingforideas in reply to Bcol]

Ok I’ve not even looked as I believed her. I’ll check it out in the morning 😃

[Lookingforideas in reply to Lookingforideas]

You’re absolutely right 😄👍I looked in the app again well after midnight and no sign of it, but it’s all there this morning 😁. So, ‘Travel’ back on in the new year ✈️🌴 🏖👍

And the lady in the vaccination centre didn’t have a clue🙄

[PMRpro Ambassador in reply to Lookingforideas]

Funny how we manage to work things out so easily - OH wanted to retire early but because Gordon Brown had half-inched a load of pension pot for other purposes they insisted they had to calculate if you would have enough to live on. There was an online calculator which took him about 10 minutes to use - the NHS took 6 months to work it out to approve his retirement - by which time we'd not only moved into a different regime for pensions but the housing market had crashed and our house sold for over £50K less than it would have.

[Lookingforideas in reply to PMRpro]

Aaaaarg! That’s awful 🤦‍♀️

[Bachfugue in reply to Lookingforideas]

Thanks for this. Mine was 215mg so well short of the 280mg.

[scats]

Thanks that was enlightening.I have never been called for a Vax. The first one I got by going along with my husband on his appointment. The second one and husband was called again, so he asked was I on the list too and they said I could come too.

Then I get a letter saying I should have a third dose, so they do know I exist.

I can see no evidence of third dose being rolled out here, yet my 50 year old neighbour, who is not immunocompromised has been invited for a booster!

My GP will not take calls on vaccines and my rheumy told me to call 119 who said oh dear afraid I can't help!!

Eventually by hanging on the phone to a number my husband found on Facebook for an hour and a half I got an appointment for a booster. I will take my letter and hope I get what I need. This article has shown me the difference, so now I go armed with info!

[Constance13 in reply to scats]

Morning Scats,

I can't remember how old you are, and where you live.

VERY strange that you have never been called for a vax! Even children are called now I believe.

[scats in reply to Constance13]

I'm old enough to know better Constance!They are calling children and that could be part of the problem, the government announce that yet another group will be called and these are all running at the same time with no extra staff.

[Constance13 in reply to scats]

How are you getting along Scats? I'm not on the forum quite as much as I used to be so I miss some posts. Are you still in touch with Ybb?

[scats in reply to Constance13]

I have been quiet too. I'm doing ok thanks have at last managed to get below 10mg after 5 years of trying, and now at 5 mg.I'm still in contact with Ybb and we occasionally meet for coffee.

How about you Constance?

[Constance13 in reply to scats]

Doing OK for my age.💥🥃🍹🍰🧁

Please give my regards to Ybb when you see her. I miss her wit (and scorn). 😂👵🏻

[scats in reply to Constance13]

I'll pas on your good wishes, thanks

[Viveka]

Great article pointing out all the flaws. Two things jumped out at me - the Moderna issue where people were given half-dose rather than full. I didn't know that third primary involved full Moderna dose. When I finally got to my third primary (apart from two hour queue of which 50 minutes was outside because they were seeing drop-ins as well as appoinments; still going on apparently) they were excellent, knew all about third primary and put me in a queue for phizer rather than moderna. I was so relieved and had no problems after the jab unlike AZ.

The other thing is that they were talking about fourth vaccine for immunocompromised - by which I presume they mean a six month booster! The language is quite crucial here.

I have some sympathy for NHSE because the letters to GP practices were quite clear. They didn't read them properly because they thought responsibility for vaccines was no longer with them. My Practice Manager told me as much and apologised.

I heard Javid lying on TV. I was a bit disappointed that the media did not take the issue up more forcefully - with cancer patients involved, it would have got some public interest. Perhaps they didn't fully understand it either!

Also good article about the masks etc. I am wearing mine (FFP2) to pilates now and have a space by the door. Rates are crazy here in Somerset.

[PMRpro Ambassador in reply to Viveka]

Yes - I said that in the long threads we had earlier - the information was out there but the GPs hadn't read it, just put it in File 13. Several people here managed to get that message through to their GPs though despite the way GPs seem to be in hibernation! But it shouldn't be up to us to winkle the information out and teach them - but then, we do it for PMR and GCA. Nothing new there then.

Javid lying on TV? You surprise me!!!! NOT ... Was just watching Shapps twisting facts to make black into white about the eastern branch of HS2. Mind boggling - and all done with a beaming smile ...

[Nightingales in reply to Viveka]

I have just had my fourth dose! I duly took my letter to the local vaccination centre. They were giving all the third dose letter recipients a third AstraZeneca. I had read that wasn’t as effective. They went away and conferred and said yes, I could have the Moderna., which I had. A few days later I got an apologetic call to say I should have been given a full dose and return for the other half. This was a vaccination clinic that has been running since the start.

[Viveka in reply to Nightingales]

It just gets worse! At least they picked up on the half dose, but really!

[Bachfugue]

Thanks for this. Pretty shambolic. It’s the first time I knew that ‘boosters’ are in fact half doses rather than a full one.

[PMRpro Ambassador in reply to Bachfugue]

Not for us they shouldn't be - and for non-immunosuppressed people, only for Moderna.

[Bachfugue in reply to PMRpro]

Thanks

[AyJayBass in reply to Bachfugue]

Only for Moderna, not Pfizer.

[Bachfugue in reply to AyJayBass]

And AZ?

[PMRpro Ambassador in reply to Bachfugue]

Not supposed to be used for the boosters at all I thought.

[Bachfugue in reply to PMRpro]

Once at the centre I asked if I could have AZ as had quite a flare after my first AZ with some mild GCA symptoms (PMR since April 2019 - Pred down to 7mg). The second dose was fine and didn’t want to risk a new vaccine. There was a medic on hand who said that was fine and suggested there was so little between that and Pfizer. And they had stock available, in fact not far off going out of date. So I was happy with that.

[PMRpro Ambassador in reply to Bachfugue]

" suggested there was so little between that and Pfizer"Not what I have read/heard ...

[AyJayBass in reply to Bachfugue]

bhf.org.uk/informationsuppo...

[PMRpro Ambassador in reply to AyJayBass]

There are innaccuracies in there - the half dose of Moderna is only for anyone who is NOT immunocompromised. They need the full dose.

[Bachfugue in reply to AyJayBass]

Thanks for this, and good to know

[tangocharlie]

I'm in a bit of a quandary, Dr Mackie has advised me not to have the 3d Primary dose as she said it would possibly trigger a reaction and further flare. I don't know where her info has come from but trust she knows her stuff given my allergies, being on Leflunomide and still on 16-20 Pred a day. So it looks like I'm shielding again for the next few months as I don't feel safe being in crowds or know what immunity I do have as I had my 2nd dose back in May. I asked about having an antibody test but she said no point. I don't know what to do

[Nextoneplease in reply to tangocharlie]

Oh tangocharlie, this sounds miserable 😟I don’t have any suggestions really, just wanted to send my sympathy. I think quite a lot of us are limiting social interaction to things we really want to do, but shielding as such is something else…

Hugs xx

[tangocharlie in reply to Nextoneplease]

Thanks, that's kind of you. I'm trying to think positive and that I'll use the next few months to do all the things I didn't finish in the last lock-down. Or even get started - clearly the reason I hadn't sorted all my stuff out and mastered German wasn't really due to lack of time a I'd told myself!

[PMRpro Ambassador in reply to tangocharlie]

I'd want to know why she thinks that. I had 2x Moderna and had a flare after the second. (only 4 weeks between here) though some of it could have been OH being so ill although he wasn't too bad at the time. I had a booster a couple of weeks ago but this time Pfizer as that is what was on offer the day I went to the drop-in centre. And whisper it quietly - but I have felt better since, Of course, the stress of OH has gone and I'm not so tired anyway.

[tangocharlie in reply to PMRpro]

Good idea, I'll contact her. I'm not sure if its to do with the fact that I'm still on 16-17.5 Pred and the inflammation is still active, or the Leflunomide, or my allergies. My instinct is to risk the 3rd jab as the consequences of getting Covid would surely be worse.

[PMRpro Ambassador in reply to tangocharlie]

That's my thought too.

[tangocharlie in reply to PMRpro]

Have forwarded you an email from her

[PMRpro Ambassador in reply to tangocharlie]

Seen it - and I do NOT get her logic. How long might we wait for low disease activity?

[tangocharlie in reply to PMRpro]

I've decided to go for it and just hope for the best. The alternative is social isolation until Covid goes back in its box as I won't risk going anywhere without a booster.

[Hopingsail]

Thanks for posting this - one useless Health Minister replaced by another. Utter shambles….