Anyone with APS or lupus anticoagulant having / had the Oxford vaccine?

[Fde9980]

I had my invite a few days ago and the vaccine centre is currently only giving AstraZeneca vaccines. I'm early 30s but have asthma (although not severe)...but I'm worried about getting the vaccine as I have lupus anticoagulant blood (sticky blood prone to clotting) and obviously there's still an ongoing investigation into the blood clot risk of this particular vaccine.

I'm wondering whether to wait a few weeks until Moderna starts up in the UK. Anyone else have sticky blood / other risk factors and thinking of waiting?

I have factor V leiden which isn't APS but is a type if thrombiphilia. I don't take the Pill and take Asprin when I got long haul.

I'm not keen on AZ although am in the "all other 34 yos" group so don't expect to receive it any time soon. I think I will try to hold out for Pfizer

I most certainly wasn't promoting "celebration" of APS, ( read earlier, my DD had a stillborn child), more a sense of solidarity amongst those who will understand. Especially as several of us have noted the rarity and lack of understanding of this particular condition.

In this setting the benefit most definitely outweighs risk
Thrombotic risk with actual Covid is appreciable
Suggest you look at the thrombosis society patient information

Prof hunt has done a few excellent talks
Eg

I have rheumatoid arthritis or mixed connective tissue disorder. I'm positive for anti ro antibodies and had the vaccine two weeks ago. Only symptom is I missed my period (on another thread about this) which is really no big deal although would have been nice to have been warned.

I was told the anti ro antibodies would make pregnancy difficult or high risk. Had no idea that they could cause sb. I'm so sorry @fuzzypuffling.

I am slightly immunocompromised so I'm really glad to have had injection. I also have family members on chemo who I would love to see soon so having it makes me feel better about that.

I understand your concerns though.

The I understand your concerns is aimed at op btw. It's so hard and so much unknown but covid-19 has stolen so much.

The thing I have learned while having APS is that it's a constant balancing act. Fortunately I am under the care of the hematology unit of my local hospital.

APS is a 'gift' which doesn't stop giving. Changes in anything from diet to activity to the price of fish can lead to a change in INR.

Some people having the Covid vaccine have noticed their INR go up. Mine is in a flip flop mood at the moment (diet change, medication change) so I'm not sure if I had the same effect.

They've updated the guidance for AZ following on from the announcements earlier, it mentions APS now. www.gov.uk/government/publications/regulatory-approval-of-covid-19-vaccine-astrazeneca

"Administration of the COVID-19 Vaccine AstraZeneca in patients with a history of cerebral venous sinus thrombosis, acquired or hereditary thrombophilia, heparin-induced thrombocytopenia or antiphospholipid syndrome should be only be considered when the potential benefit outweighs any potential risks."

Is anyone with just lupus anticoagulant not a full APS diagnosis (ie hasn't had a thrombotic event) going to speak to their doctor?

@theotherfossilsister
Going slightly off-topic here but I also have lupus (or possibly MCTD) and anti-ro antibodies. Anti-ro antibodies do not actually have anything to do with clotting however they can attack the AV node in the baby's heart. This slows down the electrical signals and could cause the baby to be born with heart block which requires a pacemaker. If everything is fine after 24 weeks then the heart should be strong enough to withstand the antibodies so the risk goes down significantly from there. The risk is highest between weeks 16-24 when the heart is developing so that's when you need close monitoring.

Just wanted to add this since I had no idea about it after I got pregnant! I always thought lupus pregnancy problems were only related to clotting and I was cleared for APS & lupus anticoagulant. However anti-ro is something different and carries its own set of risks.

@winkingeyealcoholsuggestion

They've updated the guidance for AZ following on from the announcements earlier, it mentions APS now. www.gov.uk/government/publications/regulatory-approval-of-covid-19-vaccine-astrazeneca

"Administration of the COVID-19 Vaccine AstraZeneca in patients with a history of cerebral venous sinus thrombosis, acquired or hereditary thrombophilia, heparin-induced thrombocytopenia or antiphospholipid syndrome should be only be considered when the potential benefit outweighs any potential risks."

Is anyone with just lupus anticoagulant not a full APS diagnosis (ie hasn't had a thrombotic event) going to speak to their doctor?

I'm going to speak to mine. But I also have allergies and a stillbirth which had APS listed on the post mortem (wasn't the main cause of death though) so I would imagine i count as not having it ?

OpheliasCrayon this must be very difficult for you having it brought up so much. Hope you get some good advice from your doctor.

Would that include age in the risk analysis? I want my second dose of AZ and am now worried I won't get it!!!!

No you should still get it, they said only miss the second if there was an issue when you had the first. Someone on twitter asked this to thrombosis uk, they'd had the first because of APS, they said have the second one.

@pommedeterre I think they said all the cases were following first doses so presumably you should be safe for the second dose, having not reacted first time?

Ah, ok, thanks both!

I wish when they put out new advice, that it was in details and much more clearly for people with blood clotting conditions already!

It would have been helpful. I don't think my GP would know what to tell me. I just keep checking what Beverley Hunt is saying on twitter.

I'm really frightened, having a full on anxiety attack. Had AZ 3 weeks ago, got lupus anticoagulant and previously had DVT. I'm on aspirin.
I spoke to my GP before the first jab and he basically said it was nonsense, now it doesn't seem so. Apparently clots can happen up to a month afterwards and I'm sitting here freaking out. Not sure what to do about the second and feeling like nowhere to turn.

Thank you for this thread OP. I have APS and was originally told it would only cause problems in pregnancy. I had 4 miscarriages and had to take aspirin/heparin in my 2 successful pregnancies. It was only through my own research that I found out it is something that will be with me all the time, not just a problem in pregnancy. I had to suggest to my GP that maybe it was a good idea for me to take aspirin daily and she agreed. I had the AZ vaccine 4 weeks ago.

I'm really pleased to find this thread! I have APS, which was diagnosed after recurrent miscarriages. Drs also found a blot clot in my heart after pregnancy and I am now on warfarin for life. I had the first AZ vaccine mid March with no side affects but I'm a wee bit worried about the second one. I suppose it's a bit reassuring to know that the problems (so far!) have been with the first dose. I'm just waiting for more info and am glad I don't have to make the decision now.

Oh this looks good, thrombosis uk say the MHRA guidance (that I quoted above) isn't relevant and has written to them to ask them to amend it.

here

"We wish to draw to the MHRA’s attention that there is no evidence that individuals with a prior history of thrombosis or known risk factors for thrombosis are more at risk of developing the immune complication reported after the AstraZeneca vaccine.

"Furthermore, for the majority of individuals, the risk of recurrent thrombosis due to COVID-19 infection is far greater than the risk of this syndrome."

(found on Beverley Hunt's twitter again, she's very informative)

Please see comment below from Prof Hunt, prof of thrombosis at Guys and St Thomas’ and worldwide APS expert

She's bhwords on twitter, it's worth following her.

That's reassuring, thanks for sharing