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Original poster

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

75 replies

Fde9980 · 01/04/2021 15:13

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?

OP posts:
pommedeterre · 03/04/2021 18:20

[quote Lucyk1]@pommedeterre

Im not on any medication for mine. Neevr met anyone with it either.[/quote]
Everyone irl looks at me a bit cross eyed if I have to explain what I have.

I assumed everyone with aps was on medication. I discovered I had it when I had a very serious clotting issue about 15 years ago.

FuzzyPuffling · 03/04/2021 18:24

Mine come hand in hand with lupus, and I've never had any clotting issues that I am aware of. It was diagnosed by my rheumatologist during the battery of blood tests.

I am worried I have passed it on to my DD - she had a stillbirth.

mustlovegin · 03/04/2021 20:46

I have Hashimoto and Coeliac disease.

What would prompt you to seek a diagnosis for Antiphospholipid Syndrome? What I mean is, could you have the syndrome and not be aware of it?

If you have other autoimmune diseases, is it worth testing for APS antibodies before taking the AZ vaccine (just to take any necessary precautions before having it)?

Fieldofmemes · 03/04/2021 20:49

I'm really encouraged to hear everyone on this thread has been thinking about their own situation and risk vs benefits of vaccine, talking to GPs etc!. I think it is just a question of managing your own situation - I'm pretty sure if you're on warfarin or another blood thinner you'll be fine. Probably more risk if you aren't on one at all as all the vaccines have been linked to clots but Covid even more so of course. @OpheliasCrayon I thought it was only the Pfizer one that you couldn't take if you have allergies? @pommedeterre yes, it's always exciting meeting someone with APS isn't it? - we're so rare

Fieldofmemes · 03/04/2021 20:50

@FuzzyPuffling so sorry to hear that - I didn't realise you could pass it on...

Fieldofmemes · 03/04/2021 20:52

@mustlovegin I think they only test you if you've had a clotting event or other related blood problem, as it's quite complicated to diagnose. Most doctors don't know much about it.

GnomeDePlume · 03/04/2021 21:19

APS here, on lifelong warfarin and occasionally clexane when my INR drops. I have had a couple of thrombotic events (one when I was on warfarin!).

I have had first AZ jab and plan to have the second.

My reasoning is that to me the risk of getting covid (I am also T2 diabetic) is greater than a small risk from the vaccine

mustlovegin · 03/04/2021 21:37

Thanks @Fieldofmemes It does seem tricky

winkingeyealcoholsuggestion · 03/04/2021 21:44

mustlovegin mine was tested because I was forever turning up to the rheumatologist covered in bruises. Never realised that wasn't normal!

I was told to take aspirin but can't take it with naproxen and I feel about 700 years old without it.

Sevensilverrings · 03/04/2021 22:09

Actual people with APS!
I’ve had the AZ jab..felt ropey for 48hrs, but nothing too bad. It was just before all the clotting issues were discussed, but on balance I think it was the decision I’d take anyway.
I have untreated APS (because it only caused issues during pregnancy, and they say they don’t treat unless I have a non pregnancy clotting event). I also have Lupus, which is also untreated because it’s mild, but I’m monitored with bloods etc every six months.
I will have the second jab, but I’m going to be a little nervous.

mustlovegin · 03/04/2021 23:19

@winkingeyealcoholsuggestion

I do bruise easily, but as far as I'm aware it's always been as a result of bumping into something. Not 'spontaneously' IYSWIM. I've never given it much thought either.

My DF also bruises very easily. He had his first AZ dose 5 weeks ago and he's been completely fine so far (touch wood). He's male and elderly though.

I will check with my GP just in case.

FuzzyPuffling · 04/04/2021 10:43

Sends love and hurrahs to real people with APS. We are a rare breed indeed.

I bruise easily too, but never really linked the two. In my head bruising is runny blood, APS is sticky blood.

ApplePieDessert · 04/04/2021 11:35

Sorry to hijack this thread a little bit. I've recently had blood tests that have returned "Elevated IgG anticardiolipin and beta2GPI antibodies" and am now waiting to see hematology which will be months. I had these raised blood tests results years ago and doctors did nothing and said I was fine, but now after it's come up again it's been decided I may be higher risk of clots.

Never had a thrombotic event and never been pregnant but obviously concerned, especially because I probably won't see hematology by the time I get the vaccine.

Not sure if I should be worried about the vaccine etc cus I'm not on medication for it?

It's freaking me out because I probably won't be able to see a consultant by the time I get offered a vaccine.

winkingeyealcoholsuggestion · 04/04/2021 12:27

ApplePieDesert you could ask your GP if you're offered it before you see the consultant. Earlier in the thread I said thrombosis uk say the risk of clots with covid is higher than the risk from the vaccine, I can't see anything on their site that says they've changed this advice since the recent news. I have to admit I'm much happier about the "no first jabs in April" thing now though. 😂

mustlovegin I rarely know where my bruises are from, I've woken up with bruised eyelids before. I think the fact I was completely unbothered about them at the time was one of the reasons they checked, although tbh rheumatology test you for everything they can think of. I'm not sure how receptive a GP would be to testing you, mine just told me what symptoms to look out for.

Fieldofmemes · 04/04/2021 12:37

@ApplePieDessert e-mail or telephone the secretary of the specialist that you saw for advice - GPs often don't know much about APS and the vaccine issue is so new that I doubt they've had much info about who may be at risk. FWIW my consultant told me there was NO greater risk for people with APS. I think the higher risk is likely to be for people with a history of CVST or HIT - those are the groups that the Australians advised should defer vaccination.

FuzzyPuffling · 04/04/2021 18:12

My rheumatologist (who knows all my bloods and history) told me to get the jab - any jab - just as soon as it was offered to me. No question about her views.

OpheliasCrayon · 04/04/2021 18:31

@Fieldofmemes

I'm really encouraged to hear everyone on this thread has been thinking about their own situation and risk vs benefits of vaccine, talking to GPs etc!. I think it is just a question of managing your own situation - I'm pretty sure if you're on warfarin or another blood thinner you'll be fine. Probably more risk if you aren't on one at all as all the vaccines have been linked to clots but Covid even more so of course. *@OpheliasCrayon I thought it was only the Pfizer one that you couldn't take if you have allergies? @pommedeterre* yes, it's always exciting meeting someone with APS isn't it? - we're so rare
I think that's the advice yes. But unfortunately I have had such a huge number of very serious reactions, and no one has ever really been able to pin down the specific thing / element of a drug that's done it... That the advice I have been given is not to have any. This isn't limited to just covid vaccinations, there are a huge number of medications that could treat the chronic health issues that I have that it's been decided I can't take either. I'm left with multiple major surgeries as my only remaining option now as my drs think so many things are too risky... So it's just the same for me with all the vaccines. Especially since I've had covid and I was absolutely fine
RedFrogsRule · 04/04/2021 18:35

I have APS and didn’t think twice about the vaccine. Covid is a far greater risk. 127,000 deaths....

juggler82 · 04/04/2021 18:44

I have lupus and APS antibodies. I’ve never had a clotting event but had to take heparin throughout my pregnancies. Apparently heparin can also cause CVST and I didn’t think twice about taking that, so it would seem slightly ludicrous to not have the second jab (had the first with mild side effects).

pommedeterre · 04/04/2021 18:51

I didn't know that about heparin. I took fragmin in all my pregnancies and recently when I had a colonoscopy. Definitely not worried about AZ anyway but that reassured me even more.

Fieldofmemes - We are rare! I do find that haematology types find me extremely interesting preens.

FuzzyPuffling · 04/04/2021 20:01

Can we all have an APS badge please? :)

OpheliasCrayon · 04/04/2021 21:52

I can't say I feel so much like celebrating the rarity of something when it makes it's way onto the post mortem of your late stillborn baby. But there we go that's just me...

Fieldofmemes · 04/04/2021 23:46

@OpheliasCrayon so, so sorry ..... I had several miscarriages from APS too. you're right, it's not exactly cause for celebration. Maybe just need to raise awareness of it.

YellowPurple · 04/04/2021 23:59

My partner has lupus anticoagulant and Reactive Protein C deficiency
He nearly lost both feet due to hundreds of tiny clots in his blood vessels causing ulcers that covered his feet and ankles for 7 years
He was diagnosed with this and was put on the blood thinner Rivaroxaban and the ulcers have cleared and he can walk again

He had his jab 8 weeks ago, felt abit rough for 2 days but other than that was fine.
Due the next one in 3 weeks.

He was Clinically Extremely vulnerable and shielding due to these conditions.

He wants his life back as i do, im also CEV.
Weve been at home for 13 months now.

He will be having his 2nd jab , 100%

OpheliasCrayon · 05/04/2021 01:51

[quote Fieldofmemes]@OpheliasCrayon so, so sorry ..... I had several miscarriages from APS too. you're right, it's not exactly cause for celebration. Maybe just need to raise awareness of it.[/quote]
Honestly I didn't know I had it until it showed up in the post mortem and I then had further tests for it and it was confirmed. I csnt have more children anyway after what happened. It wasnt the main cause of death, we knew that at the time as was confirmed by the PM but then the APS showed up and was then listed as an extra contributing factor.