Lupus and COVID-19 Vaccination - UPDATED 21/03/2022 - LUPUS UK

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Lupus and COVID-19 Vaccination - UPDATED 21/03/2022

Paul_Howard profile image
Paul_HowardPartner
23 Replies

Hi everyone,

The NHS is beginning the rollout of 'spring booster' COVID-19 vaccine doses today. This booster is being offered to:

* Over-75s.

* Residents of elderly care homes.

* People with suppressed/compromised immune systems.

The spring booster should be offered around 6 months (and not before 3 months) since the last dose of vaccine. This means many in the immunosuppressed group may not be eligible quite yet due to the delays in administering third primary doses and booster (fourth) doses.

You can find out more on our website at lupusuk.org.uk/covid19-vacc...

23 Replies
Spanielmadlady profile image
Spanielmadlady

I've had an text invite this morning but had my 4th vaccine in Jan. it seems unclear as to whether this includes those of us who have had no4 already

Paul_Howard profile image
Paul_HowardPartner in reply to Spanielmadlady

Hi Spanielmadlady . Thank you for sharing this. I've seen similar reports elsewhere and it seems that there has been a failure to properly account for people who had three primary doses.

If you are immunosuppressed you should have this additional booster between 3-6 months after your most recent dose (the booster/4th dose in your case).

This means that you shouldn't book it at the moment.

Spanielmadlady profile image
Spanielmadlady in reply to Paul_Howard

Thanks.So I'll be getting jab no5 in April 3 months after no4 ? ....what with b12 and fortnightly bloods too the term sieve comes to mind x

Paul_Howard profile image
Paul_HowardPartner in reply to Spanielmadlady

They recommend that this 'spring booster' should be given around 6 months after the last dose. However, I've seen many people are getting invited anywhere between 3-6 months and therefore individuals are having to take some responsibility and choice about the most suitable time to have it.

Spanielmadlady profile image
Spanielmadlady in reply to Paul_Howard

Having had so many in a short space of time it is quite appealing to wait until later on the year but I will do whatever is advised by my team.cheers Paul

ExtremeDuvetDaze profile image
ExtremeDuvetDaze

Is there any news on when those that are Clinically vulnerable that aren’t immunosuppressed who had their vaccines six months ago will get another booster, I feel as though people like myself are being left out and the autumn seems like a long time to wait especially with rising infections ?

Diane

Paul_Howard profile image
Paul_HowardPartner in reply to ExtremeDuvetDaze

Hi ExtremeDuvetDaze . No news about this yet, but the coalition of charities supporting at risk people has a meeting with the Vaccines Minister, Maggie Throup, next Monday and we have that on the agenda.

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply to Paul_Howard

Excellent thank you Paul, I’ve also contacted my MP about this and she’s contacting her senior colleagues.

Would you be able to let us know if/when you hear anything as I feel quite anxious as time goes on and immunity will be waning please?

Many thanks

Diane

Paul_Howard profile image
Paul_HowardPartner in reply to ExtremeDuvetDaze

Absolutely! As soon as I learn of anything, I will share it on here 😀

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply to Paul_Howard

Thank you Paul 🙏

soootired profile image
soootired

I had my 4rd primary at the end of November 21 and haven't been invited for a booster. Is this spring one my 4th booster or should I have already had it? Sorry for the question!

Paul_Howard profile image
Paul_HowardPartner in reply to soootired

Hi soootired . I'm assuming there was a typo and you meant to say you had your third primary dose at the end of November?

If that is the case, you should have been invited for your booster by now. Unfortunately, many people eligible for three primary doses have been missed from automatic invitation for their booster.

I would recommend that you book a booster dose now. You may then be eligible for another booster around 6 months later to maintain your protection.

Loopyru profile image
Loopyru

Thanks Paul. I booked a Spring booster last night online. I was offered an appointment 3 months after my last one. The good news is that it said you can show a hospital letter to prove you are immunosuppressed or bring a recent box of medication to prove. ( can’t remember the exact wording) This is good because those previously without a letter can show they are immunosuppressed by showing their medication.

Poshcards profile image
Poshcards

I am still waiting for my 4th jab!! Doctors dont want to know x

Suvi8901 profile image
Suvi8901 in reply to Poshcards

Covid boosters:bbc.co.uk/news/health-60795121

cakerbaker profile image
cakerbaker

I have only had 2 vaccines as had a recent, well since Christmas flare where my skin started to break down etc so have waited as I too get a post vaccine flare. Unsure what to do next. Any advice from anyone very gratefully received. I am still new to lupus and although I am a nurse when it's yourself it is more difficult to navigate something when every bit of your body is intent on destroying itself..Can anyone help??

Krazykat26 profile image
Krazykat26 in reply to cakerbaker

Hi cakerbaker 🤗Welcome to the group 💐If you post this question yourself it will come up in the main thread and I'm sure that you'll get some helpful responses. We're generally a good bunch and you'll get more ideas how to move forward with the vaccines. Lots of people have had flares after their jabs too.🌈😽😽xx

Paul_Howard profile image
Paul_HowardPartner in reply to cakerbaker

Hi cakerbaker . Are you on any immunosuppressant medications? If you are, you will probably need to have a third primary dose and then a booster three months after that.

cakerbaker profile image
cakerbaker in reply to Paul_Howard

Hi Paul Thanks for the reply. No immunosuppressants just on prednisolone and hydroxychloroquine so far but it's really not settling. Having a bit of a flare and not had any help as my consultant has been sick. I have been trying to not increase my steroids until I see the consultant but knowing that another vaccine will trigger a bigger flare I am naturally worried. What do you think? Likelihood is I will need to up them if the vaccine makes this flare worse.

I had to give up my career and now have another job from home part time so worried about that.

Thank you

Paul_Howard profile image
Paul_HowardPartner in reply to cakerbaker

Hi cakerbaker ,

What dose of steroids are you on at the moment? Depending on the dose, they may still recommend a third primary dose.

I'm sorry to hear that you've been struggling and your consultant is unavailable. Do you have a rheumatology nurse helpline to call?

cakerbaker profile image
cakerbaker in reply to Paul_Howard

Hi Paul. Decided to have the 3rd dose and see what happens. Thanks for the advice.

cakerbaker profile image
cakerbaker

Hi Paul. So I had my 3rd Covid jab after horrors with the first 2 I had to summon both the strength and nerve to have a 3rd. Side effects none to speak of. What a relief. Thanks for your help. I am on pred 5mg ATM and hydroxychloroquine 200mg with 400mg alternate days.

Paul_Howard profile image
Paul_HowardPartner in reply to cakerbaker

I'm really glad to hear you had no problems with the 3rd vaccine dose! Thank you for sharing this.

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