What covid vaccine is safe for peop... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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What covid vaccine is safe for people with hughes

friesian47 profile image

Ive 3 daughters with Hughes APS and 5 grandchildren but vaccine risky

9 Replies

The Pfizer is generally used. I’ve had all 3 without any issues.

MaryF profile image
MaryFAdministrator

Hi, this has to be a conversation between their GP and main consultant, taking into account any allergies etc. I hope you can get some good feedback and advice for your family. MaryF

Total choice for everyone but more vaccinated the quicker we will eradicate this disease.I have my third Pfizer vaccine end of month.Had no problem at all with first two..I had my flu vaccine couple of weeks ago too

Short answer is that any of them are safe with APS, and a lot safer than getting covid.

Real question is exactly why are you "vaccine risky"? That matters for choosing vaccine. If you have history of allergies Pfizer is more risky and may be contra-indicated, on the other hand if you are younger, under 40 or so, then AstraZeneca may be contra-indicated.

Worth noting that the latest variants are infecting lots of people right through the vaccines, although vaccines still make the disease milder. I now know multiple friends, neighbours and family recently infected - all the adults double vaccinated - and it isn't completely benign, 1-2weeks off work in bed and some symptoms for some months after. And that is in double-vaccinated healthy adults with no pre-existing conditions - you can extrapolate from that for an APS sufferer, and then again for an unvaccinated one.

Talk to your doctor about which vaccine is right for you, but from where I'm sat "no vaccine" doesn't look like a good option at all.

For years it was unknown why I had allergic reactions to some injected drugs -such as novacaine and cortizone. Then I reacted to Moralax doing a prep for a colonoscopy. And my mystery allergy was identified by someone ON THIS SITE! Allergy to polyethalene glycol, aka PEG. My internist GP agreed. We did more internet sleuthing, and.... those cautions back in the early days of this pandemic regarding posdible reactions to the vaccines if one had allergic reactions to medicines in the past? Probably undiagnosed PEG allergy! Which is quite rare, actually. Since PEG is a family if chemicals ( used as a stabilizer and preservative) it is not practical for an allergist to test for it, specifically.

Our research revealed that the Johnson and Johnson vaccine has no PEG. So, I had the J&J shot with no more reaction then one would expect: a sore spot on my arm. So, no... those very, very rare reactions are NOT associated with APS! Discuss this with your doc, and if they suggest to get they shot,... then.... Get the shot!

Here in under-vaccinated West Virginia I have already seen one good unvaccinated friend die of covid. She had autoimmune issues plus diabetes plus over 60. Covid took her out quickly. Before she became ill I had been fetching groceries for her and leaving them on her porch to reduce her covid exposure. We spoke often by phone. - usually about her reluctance to get a shot. I urged her to do as her doctor suggested, but..... no. She remained skeptical and convinced that autoimmunity increased her chances of having a bad reaction to the shot. Bad shot reactions can be successfully treated if one is in a health provider place. Covid can not be so successfully treated.

My friend she is no longer with us. And just yesterday I sadly heard that another close friend has tested positive.

KellyInTexas profile image
KellyInTexasAdministrator in reply to GinaD

So sorry about your friend, Gina…

I have aps and had Pfizer twice no problems

I’m neither yea nor nay. It’s up to you, but you should know that the CDC says on their site, "People with autoimmune conditions may receive a COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of COVID-19 vaccines for people with autoimmune conditions.”

KellyInTexas profile image
KellyInTexasAdministrator

Dr Beverly Hunt, OBE, and one of the UK’s leading hematologists, and APS specialists, is on the panel that helps evaluate clotting/ bleeding risks of the vaccines - VITT.

She has many charts and graphs that help guide these living documents.

She ishas spoken to the safety of the Pfizer jab ( it is safe from the APS standpoint alone) .

You can her tweets at:

Beverly Hunt

@bhwords

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