Antiphospholipid Syndrome + AZ

[OpheliasCrayon]

I know there are a few people with APS here.

Does anyone know if the guidance is either:

a) If you have APS you're 100% not supposed to have the AZ vaccine in any circumstances
Or...
b) you're not supposed to have it if your personal risk from APS outweighs the benefit of having the AZ vaccine.

I couldn't really understand which one it was because the "official" info directly mentions APS as a reason not to have it but I couldn't quite work out which of my two options it was!

I've got really bad allergies and so I'm still advised by my dr not to have any of them but I work with vulnerable children and so I'm STILL feeling like I need to consider getting one of the vaccines (I'm undecided still) but I have APS. I have an appointment with my GP anyway and will ask but I just wondered if anyone knew!

Thanks!

I don't think it's advisable from what I've read given that your body over-reacts to everything.

Would Novovax potentially be a better option for you? It's a totally different type and likely to be approved in a few weeks. Could be worth asking about.

I mean I have been told not to get any. But then I just keep thinking that I have the flu vaccine every year and don't give it any thought... So it's just playing on my mind really that I want to do the right thing by the people I work with.

I don't really think it's a matter of it being a different type of vaccine since I react to literally all manner of things - for example I've reacted to something in the carrier solution of a drug before now and I wouldn't know which bit of that it was! So it's not the way things work, just what they're made of...

But I definitely do have APS so at least that would completely rule out one thing and make the number of options smaller I suppose if I was to do it!

I'm just completely torn. I desperately want to do the best for who I work with but then I also need to be alive to go to work!!

I'm following Beverley Hunt's advice that AZ is OK for us.

her twitter

Oh @OpheliasCrayon I didn't check who it was posting! Sorry! Your question is b anyway. Did you speak to your GP in the end?

@OpheliasCrayon

I mean I have been told not to get any. But then I just keep thinking that I have the flu vaccine every year and don't give it any thought... So it's just playing on my mind really that I want to do the right thing by the people I work with.

I don't really think it's a matter of it being a different type of vaccine since I react to literally all manner of things - for example I've reacted to something in the carrier solution of a drug before now and I wouldn't know which bit of that it was! So it's not the way things work, just what they're made of...

But I definitely do have APS so at least that would completely rule out one thing and make the number of options smaller I suppose if I was to do it!

I'm just completely torn. I desperately want to do the best for who I work with but then I also need to be alive to go to work!!

I totally get that. My only thought was that Novovax is more similar to the flu vaccine technology, so may be better for you. Valneva also, but that's further away.

@winkingeyealcoholsuggestion

I'm following Beverley Hunt's advice that AZ is OK for us.

her twitter

Oh that's interesting to know, I will have a look through her stuff thank you. Am I right in thinking that it is on the guidelines that we shouldn't have it though? I'm sure that's what I saw the other week when they made the announcement. I'm happy for that to be disproved this said.

@MRex your comment that my body overreacts to everything made me laugh. I've never heard my ridiculous allergies referred to in that way but it's very much what happens! Constantly over reacting and being generally just shit!

@winkingeyealcoholsuggestion

Oh *@OpheliasCrayon* I didn't check who it was posting! Sorry! Your question is b anyway. Did you speak to your GP in the end?

Ah ok so it's never been a definate no? I couldn't work out what the original statement was saying!

No I've not I have an appointment next week about something else but I will ask her then. I'm pretty sure the advice will still be not to have any but I got my original advice when there were less choices of vaccines so who knows!

They're trying to get the guidance changed as they (hematologists) don't believe it is correct. The risk of blood clots from having covid and APS is so much higher. The letter they sent is here

No never a definite no, the official guidance says the weigh the risks.

@winkingeyealcoholsuggestion

They're trying to get the guidance changed as they (hematologists) don't believe it is correct. The risk of blood clots from having covid and APS is so much higher. The letter they sent is here

Oh ok, that's interesting to know!

Honestly this is all so frustrating, I really couldn't care less about myself being vaccinated as I've had covid and it was nothing of anything but I so desperately want to do the right thing by everyone else. Unfortunately I think the right thing by me is to not have it but is just doesn't sit well with me not to have the vaccine and it's constantly playing on my mind.

My DH & me are the most pro vax people ever but we just can't manage to justify me doing this. He has had it this said but that doesn't exactly help me at work!

I think I would let the GP make the decision and take it out of your hands. I suffer with anxiety though and use this sort of thing to stop my thoughts spiraling forever. Tbh that's the reason I'm following Prof Hunt's tweets. I can't book yet anyway which is helping too!

I think for you it's made worse by how you found out about APS.

There's an article on it here - highly technical and 2 months old. Hopefully of some help.

rmdopen.bmj.com/content/7/1/e001594

@winkingeyealcoholsuggestion

I think I would let the GP make the decision and take it out of your hands. I suffer with anxiety though and use this sort of thing to stop my thoughts spiraling forever. Tbh that's the reason I'm following Prof Hunt's tweets. I can't book yet anyway which is helping too!

I think for you it's made worse by how you found out about APS.

I've been able to book since the start of the year. First because I'm CEV (as I'm sure you know I never bothered to shield ..I'm the very antithesis of anxious, probably too far the other way if I'm honest!!) and then through work - which is why I feel so bad and really want to do it.

I feel that I just can't and I imagine that would be the only advise that I'm given... But then as I say, I alwsys have the flu jab and that's never caused a problem, and then I've had things like whooping cough when pregnant... So this is why I think maybe I should have it.

I just thought the APS thing might mean at least it definately ruled one out but it seems that's not the case. Yes it's not great how I found out I had it but I also means I don't actually understand what it is really as when I found out, I wasn't exactly in the mood to find out... I've never really known much about it and I was told it could only affect me if pregnant but I am not sure that correct information. It was a obs/gyn who told me that however, and I also had some very definately wrong, (potentially life threateningly wrong!! )Information given to me by the same team so, now it's been brought to my attention again I am beginning to think I should find out a little more about it!

Just to be clear though @winkingeyealcoholsuggestion .. APS wasn't what caused the stillbirth, it was something else. It was just found because they tested me for absolutely everything humanly possible for the post mortem. It was said it 'could have contributed" but it definitely wasn't the cause of death, that was 100% certain something else.

There’s a Q&A with Professor Graham Hughes on Thursday morning which will be focusing on the vaccines

Which would be tomorrow. You can find details on the

GHIC - for Hughes - antiphospholipid syndrome

group on Facebook.

There’s a thread for questions at the moment.

Just had a look and someone has asked about the AZ vaccine, so I’ll be interested to hear his thoughts.

@OpheliasCrayon yes I remember you saying that about the post mortem. I wonder if you could ask your GP to refer you to hematology so you can ask all your questions about APS? Or if not there is an APS support website with more information aps-support.org.uk/

If your GP already said not to have it and you've read all the information and don't want it, I think you're more than reasonable to decide not to have it. You've got no reason to feel guilty about it!

Forget about it for now, then talk to your GP next week. Tell them everything you've said (and maybe take a copy of the MHRA guidance because APS is not something they'll see very often) and see what they say.

@Littlegoth

Which would be tomorrow. You can find details on the

GHIC - for Hughes - antiphospholipid syndrome

group on Facebook.

There’s a thread for questions at the moment.

Ah amazing thank you! I have heard of him because I did originally think I should see a haematologist, but then I was (possibly incorrectly??) told I didn't need to as I wasn't going to have another pregnancy. I will have a look at this and also try and find out more about what I actually have as I'm sure it is somewhat evident that I'm completely clueless !

[quote winkingeyealcoholsuggestion]@OpheliasCrayon yes I remember you saying that about the post mortem. I wonder if you could ask your GP to refer you to hematology so you can ask all your questions about APS? Or if not there is an APS support website with more information aps-support.org.uk/

If your GP already said not to have it and you've read all the information and don't want it, I think you're more than reasonable to decide not to have it. You've got no reason to feel guilty about it!

Forget about it for now, then talk to your GP next week. Tell them everything you've said (and maybe take a copy of the MHRA guidance because APS is not something they'll see very often) and see what they say.[/quote]
If I'm going to have it, I wouldn't have it any time soon. I've got quite a lot of other health things going on at the moment and I really don't want to add in the potential for any bad reactions at this point.

I don't have any medically vulnerable students this year, so it would be more in anticipation of a new class in September as obviously I don't know who I will be teaching.

So I have time to think!

I have APS. My rheumatologist was very clear that I should grab the first vaccine I was offered.
I had AZ. And I shall certainly have my second dose in a few weeks time.

@FuzzyPuffling

I have APS. My rheumatologist was very clear that I should grab the first vaccine I was offered. I had AZ. And I shall certainly have my second dose in a few weeks time.

@FuzzyPuffling do you see a Rheumatologist for APS? This is something I'd heard of as well, that rheumatologists can treat it? I have a rheumatology appointment in a few weeks - I have arthritis ... Is this something I could ask him about?

I have APS (and factor V). Haemotologist was very clear that I should have it (AZ).

Thanks for being helpful everyone. So it seems that it's my allergies that are standing in the way then not APS, and perhaps I can speak to my Rheumatologist about it.

I doubt I can have it on the allergy front but at least there's not APS standing in the way as well if I do choose to go ahead. As it goes it's the pfizer one at the moment at our GP as my DH just had it but I'm not planning on having it anytime soon like I said.

Thanks for the help !

OpheliasCrayon. I sort of see a rheumatologist for APS. I also have SLE as the major presenting condition, but as with many AI conditions, they come in multiples.