Lupus and COVID-19 Vaccination - UPDATED 08/10/20... - LUPUS UK

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Lupus and COVID-19 Vaccination - UPDATED 08/10/2021 - Third doses and booster doses

Paul_Howard profile image

Hi everyone,

Many people with lupus who are on immunosuppressant medications have still not been invited for their third primary dose of the COVID-19 vaccine. We understand there is also some confusion, including with healthcare professionals, between this and the wider rollout of the booster doses.

You can read more about this at lupusuk.org.uk/covid19-vacc....

GP Practices have been given until the 11th October to invite eligible patients for their third primary dose.

60 Replies

🤩THANKS for this Paul…our CCG seems in a shambles re this 3rd Primary COVID Vacc…my tertiary immunology + rheumatology + gastrornterology care is at a Univ Hosp in the neighbouring CCG, so back in early Sept after our tele review appt my immunologist had written instructing my GP to ‘list’ me with its CCG for this 3rd Primary dose (I’ll attach an excerpt)..

ever since, each week I’ve asked my GP Surgery what’s up, while reminding them of my immunologist’s letter & the official JCVI instructions (on the portal & in person at reception) …and each week they’d tell me they’ve never heard of the 3rd primary vacc & the NHS will contact me when I’m due any jabs. FINALLY this week I phoned my Univ Hosp’s CCG & they were very helpful…plus I messaged my immunologist, who basically said she’d see what sneaky back room stuff she could do

I then messaged my GP on the surgery portal AGAIN in yet more detail & FINALLY the ‘senior care navigators’ let her see my message…she must’ve looked into this, cause the next morning she messaged back admitting I was right about the 3rd Primary Vacc, but that they needed a letter from my consultant confirming I qualify for it..so I replied by attaching my immunologist’s early Sept letter& said: if you can’t find it, I’ll print a copy off my Univ Hosp patient portal & bring it to you! My GP messaged back that they’d found the letter & informed the CCG I should be listed for the 3rd primary vacc…& then actually asked me to let them know when the NHS tells me I can book the jab, because NOW the surgery realises it has other patients in need

WHAT A SHAMBLES

BUT I do know one cancer patient actively in a chemo cycle @ our surgery who has been called in for the 3rd Primary jab & had it, only prob is she wasn’t actually told it was a 3rd Primary jab, so the NHS system thinks she just had her Booster. Whatever , at least this means SOME medics in my CCG are on the ball: have made sure their patients got on the NHS list for this 3rd Primary jab

For what it’s worth, my fellow U.K. Primary Immunodeficiency Disease patients have been & still are getting the COVID Vacc centre staff to put NOTES ON THE NHS SYSTEM saying they’ve actually had their 3rd Primary COVID Vacc…just so the NHS has some formal documented evidence they didn’t have a Booster jab

I’ll be AMAZED if the NHS contacts me saying to book my 3rd Primary jab by the 11th…the joke is, my lupus immunosuppression meds + my Primary Immunodeficiency Disease mean I can’t make antibodies in response to any type of vaccination anyway…so I felt kinda funny doggedly devoting that much energy to pursuing my 3rd Primary jab…but my immunology consultant thinks the history of science proves miracles can happen, so…

I feel 🥴 after all this…especially cause am still in a bit of a crisis: after 6 days emergency admission to surgical ward re Intestinal Failure etc + waiting for Spine surgeon’s treatment for stenosis etc…so of course my lupus is kinda cranky: All of which means I can’t afford loosing the spoons this 3rd Primary jab saga has used up…but I felt like a dog with a bone about this, and still do GRRRRR .

Hope you dear folk don’t mind me venting 💞💞💞💞

Barnclown profile image
Barnclown in reply to Barnclown

🤷🏼‍♀️

The relevant page from my early Sept Univ Hosp Immunologist’s letter to my GP & me
sunshine16 profile image
sunshine16 in reply to Barnclown

Sorry Coco you're having to go through all this extra stress and that you've not been well hoping and praying things look up for you I too am still waiting after handing in a letter from my immunologist at the beginning of September the GP said they've never received it... sending love and light as always and positive vibes keep strong lovely Coco xxx💕

Barnclown profile image
Barnclown in reply to sunshine16

What a ridiculous situation…wouldn’t wish this on ANYONE, but GOSH am glad to share the hassle with you dear ☀️…here’s hoping we get our 💉s ❤️🍀

Paul_Howard profile image
Paul_HowardPartner in reply to Barnclown

Hi Barnclown,

Thank you so much for sharing your experience. It is bonkers how many hoops you've had to jump through and how much you've had to push for this. I can't really understand how the rollout of this third primary dose has gone so completely wrong. Unfortunately, you are not alone in having experiences like this.

It certainly sounds like this is the last thing you need with your other health concerns at the moment. I hope that you are sorted soon. Let me know how you're getting on.

🥰THANKS again: EVERYTHING, inc guiding us through the pandemic, you & the team at head office are so devotedly doing to help us means a VVVV GREAT DEAL to our community…& your acknowledgement & understanding re the hassles I’m having now mean A LOT to me + go a long way towards making up for it all..I think my immunologist feels like you do..,I have a tele review with my rheumatologist chief of lupus clinic in Monday: looking forward to her take on this…

I wish all the different bodies and authorities would talk to each other.

Just had a message from my GP via the practice receptionist. Apparently, this date (11th October GP deadline) doesn't apply in Scotland, only England and I will be offered a 3rd vaccine and flu jab at the same time by the NHS board, GPs have no involvement here (in our area, don't know about the rest of Scotland). I thought there had to be at least a 7 day gap between the two (this is what my nurse said on Wednesday). I have a flu appointment letter which says that, if I'm eligible, I will get the covid booster at the same time as the flu jab. No mention of a 3rd primary covid jab. What do I do? If I turn up for my flu jab and explain that I should be getting a 3rd covid jab they'll treat me like an idiot and give me the booster because they won't know the difference. And if I refuse the booster and just take the flu jab, how do I get on the list for the 3rd covid jab when nobody is taking any responsibility? Receptionist said to continue phoning the covid helpline.

I phoned the covid helpline on Tuesday, who said it should be handled by my GP. I explained my circumstances and that GPs are having nothing to do with vaccines in my area but was repeatedly told that it should be dealt with by my GP. Eventually, she said she would go away and get some information and get back to me that day or the next. Guess what? Nobody got back to me. I've tried phoning again but they're that busy (surprise surprise) I can't get through.

Getting really fed up with having to battle for everything. Why is everything so shambolic?

Help!

**Edit**

Oh, and I still have a rash on my face, neck, chest, back etc because I've 'only' been on medication for 19 months (rash has been there for the full 19 months, occasionally less bad but always something going on) so they still haven't got that right. My lymphocytes are very low and my inflammation markers are up, should I be having a flu and a covid jab at the same time as this is happening?

Paul_Howard profile image
Paul_HowardPartner in reply to Whippet_lady

Hi Whippet_lady,

Regarding the gap between the COVID-19 and flu vaccines: Clinical practice may vary between areas. Typically nurses prefer to have a gap of 7-14 days between vaccines so that any potential adverse events can be correctly attributed to one of the vaccines. However, due to logistics and the pressures on the NHS, it is difficult for them to administer the flu and COVID jabs separately this season. The MHRA has stated that clinical evidence shows that co-administering the flu and COVID-19 vaccines has no negative impact on efficacy and it doesn't result in increased prevalence or severity of side-effects. We consulted Prof David Jayne about this guidance and he stated that there was no concern about administering these vaccines at the same time.

It would be ideal if you could have a third primary dose of the COVID-19 vaccine correctly coded on your patient records. I believe that there will be an effort to correct the coding for these doses on the records of people who are immunosuppressed, but I'm not entirely confident this will be 100% successful. If your patient record is coded as receiving a booster dose, then you may not receive an automatic invitation for a booster six months later.

Thanks Paul. I added a bit at the end of my post about getting 2 jabs at the same time as having a rash which you may not have seen. Would this still be advisable?

Also, if the guidelines are different for Scotland, would it be possible to state this in any future posts regarding the English system, please? Save us more panic and worry than we're already having. Thank you.

Paul_Howard profile image
Paul_HowardPartner in reply to Whippet_lady

Hi Whippet_lady. I'm afraid that, as I am not medically trained, I cannot advise you about whether it is recommended to have the vaccines whilst experiencing your symptoms. I would suggest that you try and ask your doctor.

The guidelines are not different for Scotland and England - I'm talking about much smaller regional variations in the delivery of the flu and COVID-19 vaccines. Those places with the capacity may be able to arrange for the two to be administered separately. In other places it may be too difficult logistically. There is no clinical guideline stating that the vaccines must be administered separately, and as mentioned in my previous comment, the clinical evidence indicates no problem with administering them together.

Sorry, I was meaning the 11th October guideline for GPs to have 3rd dose appointments out. I shan't try my GP again, it's far too much hassle, I'll just have to take my chances and keep my fingers crossed. There's only so much fight a person has.

Keep up the fight 😃

Hi there. If you were on the Scot.gov shielding list and on immunesuppressant you should have received a letter or be going to receive a letter inviting you for a third vaccine.

They offfered me my flu vaccine at same time and I could easily have said no and it would have been done later. GPs aren’t involved in Scotland this time round so it’s coming from a central vaccine system. I don’t seem able to access any online information that I’ve had it though but will keep looking - presumably it goes to my GP practice.

I had Pfizer this time and I did have a few fluey days and sore arms followed by 3 long days of Iloprost infusion. Not fun but glad I’ve got through it all.

I’ve also had a week off Mycophenolate having spoken to a rheumatology registrar for review three days prior to vaccines - who said if I wanted to then it would not harm and may help me mount a better response - although is not the guidance being given by BSR. He said the week after is best to come off it if I wanted to so I did.

There is more in the letter of invitation saying this 3rd vaccine is due to UK-wide advice based on JCVI guidance on people with weakened immune systems. I don’t know how it’s logged as a 3rd vaccine because the rheumatology registrar has called it a booster in his letter - but the nurses in the town hall I attended knew it was a 3rd vaccine.

Public health Scotland leaflet about 3rd Covid vaccine 2021

I've had a letter about my flu jab with leaflets enclosed about the flu jab and the booster. Nothing about the 3rd primary covid jab which I should be getting as I'm on 25mg methotrexate weekly and 10mg prednisolone daily. I phoned the Scottish covid helpline, they told me to get in touch with my GP as it was being done through them. I thought it might just be my area that was bypassing the GPs but if the whole of Scotland is doing it that way then why don't the people on the Scottish helpline know that? I phoned my GP and was told to phone the helpline. Even though I've explained to both, neither are interested in sorting the problem out or helping me to sort it out, they just tell me to get in touch with the other. It's incredibly frustrating and very upsetting. I'm also, I want to say, flaring, but I don't really know what that entails. I have a rash, but I've had a rash of some description since I was diagnosed 20 months ago! Should I be getting 2 jabs at the same time while this is happening? Does anyone care? Does anyone want to help me try and get rid of it and enable me to reduce/come off steroids? Short answer - no. Is it too difficult a problem to deal with and do they have me over a barrel because there's no alternative? Yes. So long as the "we've seen this patient in the last 6 months" box has been ticked and the problem has been handed on to someone else (who doesn't actually exist at the moment) then why should they care? Target met. Carry on. 😡

I'll turn up on Tuesday evening for my flu jab. If there are too many people there, as I've been told is happening because they're having drop in clinics in the same venue at the same time, I'll just go home. If they try to give me a booster I'll explain YET AGAIN, probably cry, feel like an idiot and go home feeling even more depressed than I already do!

Firstly I’m so sorry you’re flaring and feeling stressed by the whole 3rd vaccine saga.

But just to remind you that I’m here because I’m unwell too and was simply trying to give you information I’d been given and actually reassure you that you will probably get the option on whether you wish to have both vaccines together or not if the hub is like mine. I was terribly stressed out before mine a week ago as well.

Regarding the third vaccine - please read my reply to Paul at the end which gives the letter heading and para of info plus leaflet about 3rd vaccine. If you didn’t receive this type of letter or leaflet then I am guessing you should have. I asked when I arrived to double check having read a post on NRAS HU (I have Overlap/ MCTD/ Sjögren’s and systemic sclerosis).

The reception person seemed to think 3rd dose and booster were same but the nurses just said it was third primary and I’d get Pfizer this time too. I believe it’s all worked out in each area as a result of medication, dosage and underlying condition due to Octave study’s preliminary publication.

I think Mycophenolate at max dose plus regular Depomedrome injections is even more immune suppressing than methotrexate - second most to Rituximab.

I also haven’t a clue if there’s a real difference between the actual content of vaccines that are primary and the boosters (my rheumi doesn’t seem to think so) but I do know that the timing interval is different so it may just be this that’s confusing everyone because the BSR and JCVI want 3rd vaccines to be given out ASAP but boosters to be delivered six months after second vaccines with same priority groups as first two ie elderly, key workers, then over 50s etc.

But the hub felt safe with all distancing and mask wearing respected and, from what I could see, others there had chemo scarves on and were talking about chemo to the nurses and it was all very calm and methodical with most if not all getting Pfizer. Hopefully it won’t be as bad as you’re dreading it being and they will understand your anxieties and address them there and then for you 🤞🏻😊

Sorry if I came across as snappy. I'm not very good at getting things from my head to my typing fingers and always seem to get it wrong. I think I must assume, unknowingly, that the reader knows exactly what I'm talking about. Obviously, they don't and, clearly, I don't explain myself very well.I have been very stressed and very depressed lately and nothing seems to be going right. What do I mean "seems", nothing IS going right. I get all my information from here because none of the medics I'm involved with tell me anything really. I'm not sure they have the experience to answer my questions but the annoying and frustrating thing is that they don't want to make any effort to find out. Sorry, I'm banging on again. I don't know what I'd do without this place.

Apologies again x

No worries don’t apologise. I do understand but I try not to vent my frustrations too much on fellow sufferers because we all rely on each other for information and support and it’s all been so stressful for most of us to be sick while a pandemic is underway.

Each time one of the vaccine programmes comes up I assume that I’ve fallen through the net again. With Covid vaccine no.2 I almost did due to my former GP practice’s incompetence. Basically they offered all shielders our own day (in heavy snow) but then when time came for second jab I phoned and they told me they weren’t doing shielders as no more funding so I’d need to phone the Scottish vaccine number.

I did - took ages - to be told that I wasn’t on the central register now as had declined first vaccine - so GP would have to give me the no.2 vaccine.

So I phoned back very annoyed at the practice and young receptionist sounded dumb horrified at what I relayed and said she’d ask her manager and phone back. Within 30 minutes she called back with a appointment time. She didn’t thank me for doing all this work or apologise for the extra stress but she was sweet person so that was enough. All shielders were then invited in on same day.

So I was expecting everything to go wrong again and was already preparing for battle when my letter arrived. So I just wanted to try to calm you a bit because I know how wound up I get with all this and sometimes it’s for good reason but often it’s OTT and makes me flare more.

These communities are great but they also sometimes make me feel like everyone is getting better care than I am. X

murtoz profile image
murtoz in reply to Whippet_lady

Hi Whippet_lady

We're in Scotland too (Argyll and Bute), and GP's in our area are no longer involved in the vaccine rollout, same as you. Instead it's the HSCP that is doing it. I've had some success emailing them directly (for my 15yo to get their first jab) and will be contacting them again to schedule a 3rd primary dose for my immunosuppressed wife. I am hoping they will know about 3rd primary vs booster. GP certainly didn't.

I too struggled with the national vaccine line but in the end they were able to give me a number for our health board (NHS Highlands) who had a bit more understanding of what was going on. Suggest you try emailing or phoning your HSCP, and also the health board, and hopefully between those two you'll get there!

Gizmok9 profile image
Gizmok9 in reply to murtoz

I’m Argyll &bute too my doctors have done flu jag for us but been told us Covid jag be done by public health at end October, (6 months after 2nd jag) so I’m due from 21st.

Doc said I’m probably not getting 3rd as not a transplant patient.

It’s not only for transplant patients - it’s JCVI guidance for all with weakened immune systems. I’m on other side of Scotland to you and have had my 3rd vaccine and flu too - invited by letter via NHS Scotland. It was a few weeks prior to six months since my last one so I was a bit worried I’d be turned away but all went smoothly and it was a 3rd vaccine not a booster.

Whippet_lady profile image
Whippet_lady in reply to murtoz

What's HSCP? Sorry, it'll probably be obvious when you tell me. Thanks.

murtoz profile image
murtoz in reply to Whippet_lady

Health and Social Care Partnerships. A subdivision of your health board. For instance my health board is NHS highlands, my HSCP is Argyll & Bute (as part of NHS Highlands).

You can go to hscscotland.scot/hscps/ to find your HSCP, and then click through to their website to find their contact details.

Whippet_lady profile image
Whippet_lady in reply to murtoz

I've just clicked on the link, got through to the local council's website pages about the HSCP. It tells me all about what a fantastic job they've been doing with lots of annual reports, why the integration has happened, how they don't employ anyone because the GPs do what the GPs do and the Health Board does what the Health Board does. No email address, no phone number except for complaints. Maybe I should just complain, I might get somewhere by this time next year!

murtoz profile image
murtoz in reply to Whippet_lady

Yep, complain. I had to get the contact details for my hscp from Facebook :-/

Odosmum profile image
Odosmum in reply to Whippet_lady

Hi Whippet_Lady,

I also live in Scotland and you are quite correct, GP surgeries are not being involved in the latest round of vaccinations. I have had my 3rd jab and the flu at the same time.

I was called the same day as my mil and I was able to compare our letters, which came in the blue envelopes. Hers invited her for a booster, mine invited me for vaccination. We went to the local community hospital and stood in the same queue. On registration, I was given a card with a 3 on it. Although we were sat together, it was clear that we '3s' were in a separate queue and taken to a different area to be processed. I had loads of questions to answer. I asked plenty too! Seems that we received the same vaccines as the others (they were doing the 85+that day). I am 64, so was clearly called well before my age group.

As far as I can see, the 3rd primary is an admin term to ensure the immunocompromised people are vaccinated asap. Unlike the 1st jab, where we were group 4, I think, we do not have to wait until the vulnerable elderly have been done. Presumably the thinking is that they have more antibodies than we do. Who knows?

Jude65 profile image
Jude65 in reply to Whippet_lady

Having read all the posts on the issue of vaccinations confusion set in! So I managed to have a phone conversation with the rheumatology nurse on the phone. He clarified for me that the so called 3rd primary vaccination and the booster vaccination are exactly the same dose and type of vaccination. The only difference is that people who are immune-supressed should have been invited to have the 3rd primary dose earlier whereas others had to wait 6 months after their second vaccination before receiving the booster.

The terminology used confused me but now I feel much clearer. Really it it all quite simple but seems to have caused a lot of confusion and panic. Perhaps you all already understand.

I am off to have my 'booster' this afternoon despite feeling very achy (SLE) and stiff but as I don't have a temperature suppose it is OK to do so.

Paul_Howard profile image
Paul_HowardPartner in reply to Jude65

Hi Jude65. Whilst it is true that the dose and type is identical, there is still an important distinction. As the third dose is part of the primary course, it means that people having a third primary dose will still be eligible for a booster six months later (effectively a fourth dose). Additional boosters haven't been recommended for the wider population at this time, so they would currently complete vaccination after three doses in total.

Liz2468 profile image
Liz2468 in reply to Paul_Howard

Hi Paul I’ve just had my top up on Monday so could you please let me know when I get my booster vaccine I hope you can as I’m just like the rest of the people fed up fighting for what wee believe is right and it is exhausting taken all the energy out of us if it wasn’t for this site I wouldn’t have known about it either you have done a brilliant job keeping us up to date with everything on this site

Paul_Howard profile image
Paul_HowardPartner in reply to Liz2468

Hi Liz2468. By 'top up' I assume you're referring to your third primary dose? Boosters are administered at least 6 months after the primary course is completed. Therefore, assuming the guidance doesn't change before then, you should be offered a booster in May 2022.

Liz2468 profile image
Liz2468 in reply to Paul_Howard

Hi Paul thank you for getting back to me so quick I appreciate it and a big thank you to you and this lupus site as well yous do a amazing job 🙏

Thanks so much for posting this Paul.

I too have found this unbelievable. My GP had no knowledge of this third jab protocol so I emailed him the JCVI, Royal College of Physicians and the NHS directives which even lays out a template of the invite he should have sent me.

In the end I asked him to write a letter detailing my need for the third jab and I took that, the letter from my consultant and copies of all the directives listed above to a pop up vaccine centre. After lengthy explanation, much investigation and perusal of the info I took with me, they very kindly agreed to do a third jab there and then. The system wasn't set up to accept a third jab but they listed it as a booster and made a side note of the details.

It's taken me two weeks of speaking to a number of different bodies, all wonderfully helpful and kind but all totally unable to direct me. Sadly I've missed the two week island to have a Depo Medrone steroid jab needed to abort a flare before my holiday in two weeks. No matter, jab done!

There is no way that this deadline of the 11th will be met. My GP, who is great by the way, said that he was now going to have to contact all of his patients who fall into this category.

One thing I will say: I emailed my surgery two weeks ago about this following an appt with my rheumy. I was sent a standard 'we know nothing yet' email. I truly wish I'd pursued it immediately rather than waiting for two weeks as I think I was sent a standardised response that they must be sending to all those chasing a booster. My second enquiry only reached my doc when I attached the JCVI link.

I know they are all overstretched but all beggars belief really.

Paul_Howard profile image
Paul_HowardPartner in reply to CSLO

Thank you so much for sharing your experience CSLO. I'm sorry it took you so much work to finally get the vaccine. I'm glad you got there in the end though and I hope you have a wonderful holiday.

I hadn't heard, just phoned doctors. Said NHS should be getting in contact. Said I hadn't heard anything. She said lots had heard and lots hadn't? 💁‍♀️💁‍♀️💁‍♀️

no word here about 3rd jab or booster but I do have an appointment for my flu jab

My GP has a recorded message stating they are not coordinating/providing it.

Even if I do touch base with them, from previous experience in relation to my lupus et al AIs, they'll instruct me via text message to communicate with my hospital consultants instead. This is their modus operandi, as my conditions are too complicated. I can't even recall the last time I've spoken to them.. anyway, I digress and I don't want to sound like a broken record.

My second dose was administered, coming up to, more than 6 months ago and my medication has in fact, increased in dosage since then (which the GP has been informed about). Also, from what Lupus UK has shared, I definitely qualify.

I'll mention it to my rheumatologist but it's all dependent upon, which they won't, my GP surgery following through. Unfortunately, it seems as though the glass ceiling is impenetrable. An impasse that is quite frustrating.

On a side note: I'm finding, not sure if it's the same for everyone else, that patients with chronic conditions are not being managed properly by the GP surgeries (within my area especially) since post 2nd lockdown. Just an observation and of which, I've reported to the CQC.

Barnclown profile image
Barnclown in reply to Amakura

Yup: I have to be my own GP re all my chronic conditions…have had to do this for decades..,so I can’t say the pandemic has made this even worse, but the pandemic has made it impossible for me to book the in person appts I used to have with my GP every 3 months or so, usually to agree the way forward after significant change/s to various hospital clinic treatment plans.

I have spent the pandemic feeling very upset for ‘newer’ patients & very lucky to have had decades becoming relatively fully & convincingly diagnosed while going through the monitoring & treatment process with my collection of hospital clinics…cause going through all that during the pandemic can only be a nightmare…🤦🏼‍♀️

I experienced much the same as everyone else but have managed to get my 3rd primary dose which I received 10 days ago. My consultant produced a letter on request, that was the easy bit, then no-one would do anything about it…..GP, 119, CCG, OH (I’m NHS patient facing), NHS trust vaccination team and direct email to GP. After chasing for weeks I managed to find a local vaccination hub who were starting boosters so emailed them to ask if they administer it. A nurse contacted me straight away and said to come out that day! Unfortunately I couldn’t as I’d had my flu jab the day before, so went the next week. She has a list of the 3rd dose patients and will contact them all in 6 months.

This week I’ve received a text from the hospital where my consultant is with a booking link, an email at work to put my name on the list and an email from GP to say the local trust are starting to send out info.

It has been sooooo frustrating but you’ll get there in the end.

🤩THANKS Fred 👍V Encouraging 👏👏👏👏I needed that 💞💞💞💞

Is this just for England, Paul, or the U.K.? I live in Wales. Often it’s confusing because things are written as being the total situation when in fact they only apply to England.

Paul_Howard profile image
Paul_HowardPartner in reply to Bowenlady

Hi Bowenlady,

This is for England, although most of the guidance will apply for the devolved nations too. I have more information and guidance for England because we are invited to briefings as an NHS Stakeholder. We've had no such invitations for Wales and Scotland.

I would recommend that anyone in the UK who is immunosuppressed and hasn't received an invitation for their third primary dose should make enquiries with their doctor at this stage. This third dose was originally recommended on 1st September 2021 by the JCVI and their advised it should be administered urgently.

Well! What a palaver! I phoned my GP and was on hold in the queue for 38 minutes. When I got through she said “hello” twice and when I was talking cut me off. I started again and it took me 1hr 4 minutes to get through the queue next time. She told me the booster vaccines were done by the mass vaccination sites, nothing to do with them. I explained again that this was the third primary vaccine for those who are immunosuppressed. She told me there was no such thing and I meant the booster. I read your reply to her again very slowly and she said “Well I’VE NEVER HEARD OF IT!” So I suggested she speak to a doctor who should have heard of it. Off she goes and comes back saying she knows now that I’m talking about a supplementary dose. So I’ll have three normal doses then the booster. Correct. Then she says “ it’s nothing to do with us you have to contact the mass vaccination centre” and gives me the number. I phone them and the message says I am number 38 in the queue. I stick it out and get through to a very helpful man who says he has my details but they have not been notified that I need the third dose by my GP or rheumatologist. BUT he says they are very slow and they only have some of the details coming through but it is slow. He said if I was a clear 6 months from my last vaccine he would book me in for the booster and instead give me the third dose but can’t for another month! I’ve spent the whole afternoon doing this. I’m only on Prednisolone and Hydroxychloroquine, perhaps the Prednisolone is not enough for them to consider my immune system to be compromised?

I have just read this on NHS Wales. Here it talks about “severely immunosuppressed” people needing the 3 rd primary jab. Is that what it says everywhere else? If that’s the case many of us on Prednisolone won’t be included, I’m guessing, depending on the dose. It’s so confusing.

Screen shot of NHS Wales information on 3 rd Covid jab
Paul_Howard profile image
Paul_HowardPartner in reply to Bowenlady

Hi Bowenlady,

The British Society for Rheumatology (BSR) has recommended that nearly all rheumatology patients (aside from those solely on hydroxychloroquine or sulfasalazine), should receive a third dose. Therefore, if you are on steroids, they would advise you have the third dose.

The BSR guidance is to try and make identification of eligible people more straightforward. The JCVI guidance suggests that anyone on 20mg per day of prednisolone should have the third dose. They also say anyone on 10mg per day for more than 4 weeks in the past three months should have the dose. It is much easier to extend the invitation to anyone with lupus on steroids.

Thank you Paul - so by those explanations I WOULD be having the third primary jab. Why can’t they explain things as clearly as you have??? I will contact my rheumatology nurse and wait for god knows how long for a reply but at least we have clarity now. Thank you so much.

Thanks for posting this, Paul.

I still haven't received the 3rd Primary vaccination. I'm in the home counties, treated in a huge department at a London teaching hospital which is an 80-mile odd round trip away, and my immunosuppressants are prescribed under a shared care agreement with my GP.

I waited patiently to be called for the 3rd vaccination but when it didn't happen I contacted my GP via their internet portal - that was about a fortnight ago. Heard nothing, so I went in to the surgery last week to chase it up.,

I was told that they need a letter from my consultant and the onus is on me for producing it. They've obviously never tried to get an NHS consultant to respond to an ad hoc letter request left on a department answerphone (more likely they have, which is why they're making it my problem).

I've emailed them the relevant DoH letters from here:

england.nhs.uk/coronavirus/...

highlighting the specific relevant paragraphs and annex sections that say GPs are in fact expected to identify and call forward eligible patients on their lists in addition to any requests from consultants. I'm simply astounded that this seems to have been ignored.

I'm yet to hear back, but interestingly, when I was having my flu jab at a local vaccine centre yesterday, two of the nurses recognised my name, connected it with what they'd heard about a 'lively' discussion in the surgery, and said they would follow it up! Also interestingly, I didn't need to explain the difference between a 3rd dose and a booster, so it's definitely not a alien concept on the ground even if the surgery pretty much blanks the subject.

I wonder whether it's the people who are under shared care agreements who are getting most of the problems. Among other things, I'm routinely ignored by the automatic call up for flu jabs (not this year due to the age criteria) and in the past I've had to argue very hard to get a pneumonia jab or in fact any support at all. This is totally not an excuse - the documents make it clear that GPs are supposed to do their own searches and in particular look for exceptions that might have been missed.

I'm absolutely seething but that gets us nowhere, so I'm trying to direct the fury constructively. At the back of my mind I also worry about immunosuppressed people who have not heard about the 3rd dose and are still under the impression that they're strongly protected by two doses so have dropped other precautions (or who must due eg to work commitments). Anything you can do to raise the problems with someone who can address them would be great.

Many thanks for what you do.

Paul_Howard profile image
Paul_HowardPartner in reply to Lintilla

Hi Lintilla,

From what I understand speaking with some healthcare professionals, the most significant problem is incomplete data on patient records. Many people with diseases like lupus will be prescribed immunosuppressive treatments by their hospital consultant and that treatment will not necessarily be included on GP records. Therefore, when instructed to call people forward for vaccines, it can be difficult for GPs to correctly identify all eligible patients. This is another reason why so many people, like yourself, have struggled to get the free flu vaccine each year.

We have been working with the National Congenital Anomaly and Rare Disease Registration team for Public Health England to try and address this and ensure coding is sufficiently robust in the future.

Lintilla profile image
Lintilla in reply to Lintilla

A quick update. Following the visit I made to my GP's surgery last week and the subsequent discussion with the practice manager, I now have an appointment for my 3rd primary vaccination. The surgery phoned me this morning. I'm very relieved.

As far as I can tell, the DoH letters I provided were sufficient, along with a cover note I sent referencing my drugs and doses to the relevant annex section. I was told that the surgery pharmacist checked this part.

Good luck to everyone else out there who's still going through this.

bluebell99 profile image
bluebell99 in reply to Lintilla

I have just posted about this and still going around in circles after spending hours on different phone calls.

Surely it can't be that difficult in this computerised age to sort something out properly.

🍀Very glad if it really does help💞💞💞💞

thanks Paul, just had mine booked for a week sunday

Hi Paul. Thanks for all you do.

However for clarity’s sake I do think it would help if you made it clear that this advice or situation relates to people in NHS England.

From what I’ve read here and elsewhere it seems similarly patchy in Wales and N. Ireland. Certainly in Scotland some here seem not to have been called in yet although I think it depends on which immunesuppressant we take and maybe how much - as recorded by practice pharmacists maybe (mine seem to be forever phoning me just now to clarify).

But the main difference here in Scotland is that GP practices are not involved. Scottish patients with weakened immune systems have been or should be invited in by letter to come to a hub and get third vaccines in this way. There’s a phone number on one of my photo attachments for people here to call if they believe they are eligible for a 3rd vaccine rather than needing to wait for a booster - which is done at least 6 months after the last vaccine.

3rd vaccines can be administered in a shorter time frame I believe as mine was (by a few weeks).

Extract of vaccine invitation letter

Letter heading

Extract from vaccine letter

And lastly

Public health information leaflet NHS Scotland

Thanks for posting all this.

That's the same number I phoned. The one where they told me to contact my GP and I just went round in circles. I've tried again since in the hope I might get somebody different who knows what I'm talking about but I can't get through because they're so busy ☹️

I actually tried it too because I wanted to clarify I’d be getting Pfizer this time having had both AZ previously. Took 30 minutes to answer and then I got a guy who hadn’t a scoobies just said just ask when I’m there. What I read on NRAS HU was a post from someone in Lothian who attended Usher Hall and had to stand her ground when told she was too soon for her booster by 3 weeks. She explained on her post that she politely insisted it wasn’t a booster but was a third vaccine and showed the JCVI info as she’d collected it from an NRAS webinar about this.. The admin person went off to ask and back apologising saying yes to 3rd vaccine and explaining she hadn’t processed any of us yet so didn’t know.

So if I were you I’d go to the appointment and try and do exactly the same thing - download the JCVI info and anything Paul has provided on who should get the 3rd vaccine - which basically includes you. X

Paul_Howard profile image
Paul_HowardPartner in reply to Yorshirepud29

Thank you for this Yorshirepud29. I'll look into amending our guidance to better reflect practice in the devolved nations. Unfortunately, at the time of writing, I had very little to go on.

I do understand - it’s all so patchy! But I hope these photo shots show what some of us are getting (have already had in my case) and what everyone in U.K with very weakened immune system should be getting at least. 😊

I spoke to my GP on Thursday I asked him about the third primary dose he said no its a booster and they are the same thing said he had never heard of a third jab!

Hi Paul I posted this earlier on -

healthunlocked.com/lupusuk/...

My experience is that there are two different consultants in Haematology and Rheumatology and neither knew a thing about the third vaccine. I’m worried for us all that we are being overlooked again and the problem is that when you try and raise it with a health care professional they are so dismissive.

I was expecting to have my third covid vaccination yesterday but it read booster on the little card with its batch number. I had to ring this morning to find what i had been given and it was the third covid vac by Pfizer and I will get the booster in 6 months time but not this winter. The surgery had many others phoning up querying the same thing. Its the same dose as a booster she said so if I hadn't been immunocompromised that's what it would have been. They say they will be implementing the booster programme soon but it would have been clearer if they had just written Pfizer 3rd dose on the card instead of booster. I have changed it accordingly.

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