What are your thought or experience? - Hughes Syndrome A...

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What are your thought or experience?

Evette123 profile image
16 Replies

I believe 1 clotting event due to this vaccine is one too many. What’s you experience of it? f7td5.app.goo.gl/RQuEoi

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Evette123 profile image
Evette123
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16 Replies
MaryF profile image
MaryFAdministrator

I have very serious allergies to medication and vaccines, I was taken to hospital to do mine, and yes I was unwell, but recovering and will have the same protocol with the next one. I addressed all my questions to all medical consultants involved in my care, with my GP practice copied in, this is the best way to proceed, in my opinion. MaryF

Evette123 profile image
Evette123 in reply to MaryF

Thanks Mary. I’m allergic to Penicillin and just thought I might need to raise this also with my GP. Just in case. I also chose to have it done on hospital grounds as there where I’ll feel safest. I’m glad all ok with you now.

MaryF profile image
MaryFAdministrator in reply to Evette123

They were not happy to give me/us Pfizer based on my allergy history, I had Astra Zen. MaryF

Evette123 profile image
Evette123 in reply to MaryF

Which Vaccine did you have?

HollyHeski profile image
HollyHeskiAdministrator

It's a tricky question because we are all different, for me if I get a cold, I have to increase my clexane as it a simple virus will make my blood go into overdrive. So when I had my vaccine, I automatically increased it as a precaution. I suspect that as covid in itself causes blood clots then the vaccine could too??

The numbers of severe reactions is so small against the numbers that have now had the vaccine ok does make it a minimal risk?

Any concerns should be discussed with your medical team.

Evette123 profile image
Evette123 in reply to HollyHeski

Yes, I plan to give them a call. I’m sure I read somewhere that no part of the virus is in any of the vaccines so in answer to your question I don’t think it would increase clotting based in the ingredients in the vaccine but maybe an expert in here maybe able to confirm their knowledge of it.

MaryF profile image
MaryFAdministrator in reply to HollyHeski

I was exactly the same, I had extra precautions in place, my GP had the same idea for me. MaryF

GinaD profile image
GinaD

I received the Johnson and Johnson shot on Thursday -- slight fever that night, sleeepiness the next day. And that's it. My "mystery" allergy was recently solved: Polyethylene glycols (PEGs) which is a family of chemicals often found in injectables and in Miralax. At the drive through vaccination site which I visited, the pharmacist/RN in charge had me wait while she phoned people up the supply line to make sure that their "batch" of J and J did not have any PEGs.

Evette123 profile image
Evette123 in reply to GinaD

Great they took time to find out. Glad all is well now.

Evette123 profile image
Evette123 in reply to GinaD

Never heard of the Johnson & Johnson Vaccine but glad that was suitable for you. 😊

KellyInTexas profile image
KellyInTexasAdministrator in reply to GinaD

Very glad to hear.

KellyInTexas profile image
KellyInTexasAdministrator

I would invite you to read the post Mary put up regarding Dr Arvind Kaul’ s Statement regarding this topic .

Dr Kaul is an APS specialist rheumatologist at the London Lupus Centre.

I hope it would alleviate the majority of your concerns.

Remember, from the data alone, you are far more likely to catch Covid and clot, than to have a clotting event from a vaccine.

HollyHeski makes such a good point in reminding us all that vaccines can make our blood a bit stickier. Ask your GP how to anticipate your INR adjustments during this time. ( thank you Holly, and thank you Evette for the question - we all need to be mindful of INr with vaccine perhaps. )

Evette123 profile image
Evette123 in reply to KellyInTexas

I’m trying to find Mary’s post on the report but couldn’t find it. I’ll keep trying. I also read a report on here, I believe posted by Tina which gave reassuring info re: APS and Covid.I have APS for over 15 years now but not on any medications. Seen Haematologist for in depth reasoning in my case but have not Ben offered any medication. They say I don’t need any any they wouldn’t want to start me in any medication which would be for life. I haven’t had any events so keeping my fingers crossed I remain free from trouble so I have no idea about INR numbers. Only found out about diagnosis from still born baby. So I take precautions when pregnant or long haul flights/long hospital stays etc.

As advised I’ll speak to my doc for reassurance and clarity. Thanks

Evette123 profile image
Evette123 in reply to KellyInTexas

Found it now . Tah x

dottiedoris profile image
dottiedoris

This is the info I’ve had from one of the Biomedical Scientists at work. I’ve had the Pfizer vaccine and no clots so far. I’m due my 2nd dose on Friday. I think we have to weigh up the stats with the confirmed probability that catching Covid itself makes anyone more prone to blood clots - for those of us with APS, well, it’s a scary thought. Here’s the info - hope it helps?

Your chance of developing Venous Thromboembolic disease over three months is:

3,000 per million if you are over 80

400 per million if you are over 50

200 per million if you are pregnant

160 per million if you are 25

47,000 per million if you catch Covid 19

And around 2 per million if you have the Oxford Astra Zeneca vaccine i.e., there have been FEWER reported episodes of blood clots than expected in the population who have had it.

Preserved profile image
Preserved

These stats are for which vaccine? I ask as I see you single out the stats for AZ by itself.

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