Covid vaccine in vasculitis patients (GCA/LVV/PMR... - PMRGCAuk

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Covid vaccine in vasculitis patients (GCA/LVV/PMR is a spectrum of an arteritis, a vasculitis found in arteries)

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This link

vasculitis.org.uk/wp-conten...

has just been put up on the VasculitisUK forum. It is to comments from a foremost authority in the UK on vasculitis. You will note that they gave the same responses as we have on the forum for the last few weeks! But here it is from the horse's mouth.

And the bottom line? Have the vaccine if you are offered it.

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50 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Like it!

scottygirl73 profile image
scottygirl73 in reply toDorsetLady

Thank you so much for this,i will be waiting with arm ready.😂🤣x

Bcol profile image
Bcol

Thank you, and yes, as an when offered I will be taking up the offer unless there is different advice between now and then

Frewen1 profile image
Frewen1

Many thanks! It's what my rheumatologist told me last Thursday. (She also said that if anyone with GCA on the dose I'm on ( currently 15mg) were to contract Covid "you would get it badly". Hence recommending the vaccine.

Ansteynomad profile image
Ansteynomad in reply toFrewen1

That’s interesting. I had COVID back in March, when I was on 35mg Prednisolone and there was no help or support available from the NHS or my GP. I made a full recovery in ten days or so.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toFrewen1

Not sure that’s strictly true! But you don’t want to find out that’s for sure.

Koalajane profile image
Koalajane

I will have it as soon as it is offered

Mstiles profile image
Mstiles

Do they include prednisone as an immune suppressing drug? I didn’t see it listed.

PMRpro profile image
PMRproAmbassador in reply toMstiles

That is presumably because they don't consider it a problem. It isn't used as much in vasculitis in general, things like rituximab and cyclosporin are used and they are both truly immunosuppressive medications.

Mstiles profile image
Mstiles in reply toPMRpro

So if you are on prednisone and not one of the other drugs you should take it? What effect would it have on the immune systems of those taking prednisone?

PMRpro profile image
PMRproAmbassador in reply toMstiles

You should take if you ARE on any of those medications too. Even a reduced response is better than no response.

Longtimer profile image
Longtimer in reply toPMRpro

Do you think in the many thousands that were given the vaccine non where immune suppressed?.......I only ask because it always says they don't know how we would be after a vaccine....or have I missed that. I am on MT X injections so like others I have wondered this, however I will be first in the queue......

PMRpro profile image
PMRproAmbassador in reply toLongtimer

Only in that it was trialed in older patients too - whose immune systems are expected to be less responsive than in younger people.

Horizon12 profile image
Horizon12

Interesting read. Will definitely have the vaccination if offered.

A very useful document, thank you. My main concern was that the vaccine would contain an "adjuvant" because flue vaccines have given me flares in the past.

Apparently a study has found that in a few people, and may I add "a few people" had PMR relapses caused by the "adjuvanted" influenza vaccine.

I can't find the link, but it it titled "Relapse of polymyalgia rheumatica following adjuvanted influenza vaccine: A case -based review. It was published by European Journal of Rheumatology by Margaret F Bassendine and Simon H Bridge. Hopefully the Covid vaccine will not cause me to flare.

PMRpro profile image
PMRproAmbassador in reply to

If it does - just think what the effect of a Covid infection could be?

in reply toPMRpro

Yes I agree !

Dunkel profile image
Dunkel in reply to

But for how long will we be secure of covid???Is it worth the risk??? I will see what happens first, will be the last to take it!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDunkel

“Is it worth the risk???”

Is it worth the risk not having it?

Catching Covid-19 and possible death or vaccine and living - I know what I’d choose.

Dunkel profile image
Dunkel in reply toDorsetLady

I absolutely agree with you, just, I do not like to get another autoimmune disease, and I look for that safety too, and would like to know about for how long it's hoped, the covid will not mutate, if they know?? or otherwise the safety would be over !!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDunkel

I don’t think anyone can answer whether the virus will mutate...we’ll have to wait and see......and obviously no-one wants another autoimmune illness.

But as I said, if you catch COVID you have more chance of dying with that than with another autoimmune disease.

Dunkel profile image
Dunkel in reply toDorsetLady

You are absolutely right, and all should take the vaccine, we will find out everything...later!

in reply toDunkel

There is so much unknown about this vaccine that I am sure many problems will com out of the woodwork after thousands of people take it. We are deeply in a dark place with Covid. We are between the devil and the deep blue see. So many things could go wrong, and if you don't take it you risk dying from this terrible virus which came from China.

Highlandtiger profile image
Highlandtiger in reply to

I’m just so grateful for all the efforts of the brave and selfless volunteers who have taken part in the various vaccine trials without whom we would not have any vaccine at all nor indeed the luxury of being able to choose whether to have it or not. I know what my choice will be.

Dunkel profile image
Dunkel in reply to

I do agee very much, they made this vaccine so fast, I would be extremely happy for All if it is 100% safe !! And what if the virus mutates, only a little, what they all do??I am suspicious, it sounds a little too good too fast, but anything can happen , we are positive thinking, always !!

in reply toDunkel

Yes, it's always good to stay positive, but the old saying still prevails. If it sounds too good to be true, it probably is. The only way at the moment, if we are going to get out of this pandemic is to take the vaccine if we can. The future is unknown, but one thing is sure, we will find out.

Dunkel profile image
Dunkel in reply to

YES, we will find out, so or so!!!

PMRpro profile image
PMRproAmbassador in reply toDunkel

It hasn't been done any differently from other approvals - except things were done in parallel without big gaps between and funding was never a problem. Mutation doesn't appear to be a massive problem, the spike hasn't mutated significantly in a year in the respects that matter with the vaccines. Even if it had, it is being monitored constantly and the technology allows for speedy adjustment, like sewing an extra button onto the standard outfit.

And as for China - was it? Even that isn't proven - what is certain is that Covid and a documented "strange pneumonia" was already in northern Italy in November, even before anyone in China had noted it.

PMRpro profile image
PMRproAmbassador in reply toDunkel

Suppose it depends how you look at it. But not to have the vaccine if you CAN have it is, IMHO at least, very selfish. If enough people don't have the vaccine then it is unlikely we will ever be able to ife relatively safely with Covid - because Pandora's box is open and it is out. The vaccine is Hope hiding at the bottom.

Dunkel profile image
Dunkel in reply toPMRpro

just would like not to get another autoimmune disease because of this vaccine!!

PMRpro profile image
PMRproAmbassador in reply toDunkel

But you are far more likely to get another autoimmune disease because of Covid.

in reply toPMRpro

Hope is eternal, if you believe in God, God help us!

Tahiri profile image
Tahiri in reply toPMRpro

I have multiple allergies to antibiotics and do not know if the vaccine would send me into shock , as has happened with two volunteers. I’m currently on 7mg Prednisolone for GCA .Do you think it would still be recommended ?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTahiri

That’s something you need to discuss with medical team - we really can’t answer it.

PMRpro profile image
PMRproAmbassador in reply toTahiri

Only a medical team can advise on that - and one that is closely involved with the vaccine if it comes to that. If it potential anaphylaxis that you are talking about - probably not at the present.

Tahiri profile image
Tahiri in reply toPMRpro

Thank you. I see a team in Singapore has come up with something similar to the Astra Zeneca ( antibodies only ). Let’s hope it becomes available.

MamaBeagle profile image
MamaBeagle

👍😊 Thanks Pro

SheffieldJane profile image
SheffieldJane

Helpful, thank you.

Purplecrow profile image
Purplecrow

Thank you!Happy Holidays, be safe.💜💜💜

Blackcat1M profile image
Blackcat1M

Many thanks for the information.

Slosh profile image
Slosh

I saw this on the FDA website - I would be worried because of my multiple auto - immunities already. fda.gov/media/143557/download - the side effects are a few slides down.

PMRpro profile image
PMRproAmbassador in reply toSlosh

If you mean the things listed in slide 17 those are POSSIBLE events, events already seen alongside the use of other vaccines. Not events they have seen or even expect.

It has been claimed in the past that G-B syndrome is caused by vaccines because a few cases were reported in people who had had a vaccine shortly before. However, when the figures were compared with the entire population, the incidence was no higher with than without a vaccine history. The same applies for autism and the MMR vaccine - the MMR vaccine is given at the sort of age that autism often manifests and so it is impossible to say a case was due to vaccine. However, comparing the figures at the large scale - it is no more common in vaccinated than non-vaccinated children.

If you have multiple autoimmune disorders (or maybe it is actually one syndrome which should be called Slosh syndrome) then I think you probably have far more cause to be worried about catching Covid19 since it is becoming quite apparent that long Covid is some form of autoimmune vasculitis (or other a/i condition) triggered by the virus itself. I also suspect that waiting for everyone else to have the vaccine and achieve potential herd immunity may mean you spend a lot longer in isolation avoiding the virus.

Slosh profile image
Slosh in reply toPMRpro

I have hashimotos and sporiasis. I also react really badly to chemical - so cant take a headache tablet or an anti-histamine. All my vitamin supplements have to be free of fillers too. Yes was wondering about the vasculitis. Just listened to a guy been interviewed on the FDA and although very pro these RNA vaccines he did not rule out auto-immunity. This may prove interesting:

fda.gov/advisory-committees...

dartmoorlass profile image
dartmoorlass

Thanks for the info PMRpro. My GP has contacted me, and I (plus OH) will gratefully receive Covid 'jab' next Wednesday with the second dose booked 3 weeks ahead. The more of us who accept the vaccine, the sooner we can get back to some form of normality.

PMRpro profile image
PMRproAmbassador in reply todartmoorlass

Our cousin had hers as one of the first in Preston - she is 75 I think but volunteers at the hospital so was classed as vulnerable. Just hoping my daughter gets one - works on Covid ICU this time round.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

She deserves to!

nuigini profile image
nuigini in reply toPMRpro

Hope to hear soon that it's happened!

PMRpro profile image
PMRproAmbassador in reply tonuigini

It has!!!! Day before yesterday ...

dartmoorlass profile image
dartmoorlass

They should all be first in line - the population has depended on them.

Grammy80 profile image
Grammy80

Thanks so much~!! I've passed this on to as many as I know how~!

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