Covid 19 Vaccine: Hi all Firstly I apologise if... - LUPUS UK

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Covid 19 Vaccine

MOOG144 profile image
15 Replies

Hi all

Firstly I apologise if this has been discussed already, I did do a quick search and couldn't find what I was looking for....

So they have announced that the 1st vaccine has been approved and vaccinations will start next week.

Havkngreceived the latest email which confirmed I fall into the highly clinically vulnerable group I got a little ahead of myself and got excited that with luck I would receive the vaccine sooner rather than later....

But I have now read that anyone who is immunocompromised cannot have it.

Does anyone know any more info on this? Are any of the alternative vaccines going to be approved for immunocompromised people?

Was hoping for some light at the end of a very dark tunnel that has been 2020

Many thanks

M x

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MOOG144 profile image
MOOG144
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15 Replies
Spanielmadlady profile image
Spanielmadlady

The oxford vaccine is an inert vaccine and they are also starting trials on an antibody vaccine which may be suitable for us.as we a 4th in the queue anyway the wait goes on for us .......I dont expect anything before next spring and I'd expect the advice to come from my consultant

Oshgosh profile image
Oshgosh

I have a consultant phone appointment. This is on my list of things to ask . If I find out anything, I will post

PMRpro profile image
PMRpro

I have just been listening to the tailend of an interview with a virology expert from Manchester Uni. She defined the immunocompromised as HIV/AIDS patients, transplant patients, cancer patients and renal dialysis patients and those with inherited immunoglobulin disorders. None of these groups can have vaccines.

In general, autoimmune patients who are on immunosuppressant medications CAN have vaccines but there will be certain exceptions and live vaccines are usually not recommended except in special cases/

This explains it well I think and it has a section about autoimmune disorders:

immunisationhandbook.health...

eekt profile image
eekt in reply toPMRpro

The top two UK vaccines are RNA (not some of the virus, live or in activated), working by stimulating the immune system...from the BBC:

'The vaccine is a new type called an RNA, and uses a tiny fragment of the virus's genetic code. This starts making part of the virus inside the body, which the immune system recognises as foreign and starts to attack.

An RNA vaccine has never been approved for use in humans before' (bbc.co.uk/news/health-51665...

The Oxford/AstraZeneca one's Phase 3 trial (ie trial involving 1,000s of people) was somehow cobbled together from various studies in the UK and Mexico ie not really Phase 3....trials ongoing

SLE falls between two stools, neither immunocompromised 'normal'.... just dysfunctional, sigh....but I won't be letting any vaccine tickle my lymphocytes any time soon, thank you very much

Hoping all's as well as possible in your part of the world PMRpro! xxx

Roarah profile image
Roarah in reply toeekt

These vaccines might be similar to flu vaccine in that they do not eradicate the virus but rather prevent those who are exposed and actually infected to the virus from suffering severe disease. That is all the studies show thus far and the makers and epidemiologists all warn that the vaccines only protect those who get it from getting very sick and in actuality might not at all prevent one from catching nor spreading the virus. One who opts out of the vaccine is believed to still be very much at risk of catching and possibly dying from covid. It is not like a measles’s jab where some taking the vaccine protects even those who do not...Coronavirus will become an endemic concern even with a vaccine.

If your doctor suggests the benefits out weigh the risk you should certainly listen.

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi MOOG144,

We will be releasing an article on lupus and the covid-19 vaccine soon. Please keep an eye on our website and social channels.

Best wishes,

Chanpreet

Roarah profile image
Roarah

There are very limited quantities of the vaccine and in most countries health care providers and nursing home residents will likely be the only group able to have the vaccine this year. They did not include immune suppressant patients in trials so it will come down to a benefit vs risk individual assessment by your doctor. Here is a great article hematology.org/covid-19/ash...

DJK99 profile image
DJK99 in reply toRoarah

Very helpful article, thanks Roarah.

Treetop33 profile image
Treetop33

I'm assuming that, as many of us can generally mount resistance to viruses (I can, with some caveats), we'll be ok for the vaccines. I'm only on a low dose pred. For me it comes down to risk/benefit - I don't normally have the flu vaccine because flu, while horrible, is predictable. I will have the Covid vaccine when offered because it's my only route back to a normal life. I'm too young to stay indoors and away from people forever.

Roarah profile image
Roarah

When ever I need a new treatment my team of specialists, two cardiologist one is my surgeon, my hematologist, my rheumatologist, my dermatologist, my neurologist and my GP all converse via email as to what they each deem best together and if there are conflicting opinions, as there was with my plavix, aspirin as warfarin triple treatment, they present both options and I decide which way to go. You should try the same when they consider the risk vs benefit of this so far very safe proven vaccine.

If my specialist suggest I get it, which I expect all of ours will, I will happily oblige. I am much more afraid of our society needing to continue on like this.

KayHimm profile image
KayHimm

The problem is covid is proven to harm lupus patients. The experts may make assumptions based on prior reactions with non-live vaccines. The risks have to be weighed against the benefits.

Roarah profile image
Roarah

The same is said for elderly people, diabetics, neurological and cardio patients. It is deemed by most in the know to be far less likely a risk for these high risk covid populations than catching covid would be...

Again one should be being steered by their personal doctor. Make you decisions only after your doctor assesses your personal benefits vs risk ratio. Rather than making decisions based on fear let your doctor help make it based on the facts specific to your health.

mRNA is actually not a brand new science it was developed over ten years ago and has been very well studied in labs and has been used in cancer vaccine trials most notably as a breakthrough stage four melanoma treatment. It is also on the forefront of Glioblastoma ideas to improve survival rates. This vaccine has lots to look foreword too. Messenger RNA might very well be the precursor to a lupus cure. Let’s be hopeful not fearful.

KayHimm profile image
KayHimm in reply toRoarah

True.

Roarah profile image
Roarah in reply toKayHimm

I would like to also remind people that roughly 2000 deaths per year in America are lupus related while 275k lives were lost to covid in the USA this year! Covid is far scarier than the vaccine in the greater scheme of things.

KayHimm profile image
KayHimm in reply toRoarah

To me it is. Four lupus patients died of Covid by the end of August at NYU medical center. I hope that number doesn’t go up before the vaccine is available.

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