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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:
OpheliasCrayon · 01/04/2021 15:19

I have these! The APS also contributed to a stillbirth so.... Yes I'm not having it. However I also have severe (I mean very severe - life threatening) allergies so I'd already decided with my drs I wouldn't have it prior to the clotting thing; but this was the final nail as it were

Shosha1 · 01/04/2021 15:30

I have Lupus SLE, I also had 13 misscarisges and also have asthma.I had the vaccine a month ago. I definitely felt the benefit outweighed the risk.

Fieldofmemes · 01/04/2021 16:14

I have the same condition. It's such a difficult call. One of the German cases apparently had underlying antiphospholipid antibodies although of course that could just be a coincidence. I asked for the Pfizer vaccine instead and was told it was being reserved for second doses. I have had conflicting views from doctors as to what I should do (majority said the vaccine was safe, that's the party line) so I think I'm just going to wait for the time being and keep on top of all the news on it. Then again, I had Covid last year and it was pretty mild. If I hadn't already had Covid I might make a different decision.

Original poster
Fde9980 · 01/04/2021 16:16

I've also read that lupus anticoagulant can be a risk factor for severe COVID / thrombosis as a result of COVID so feel like there's no easy answer on this one. I'm hoping once Moderna gets rolled out in mid April they will start saving the Astrazenca for people's second doses so I can get that one.

OP posts:
Fieldofmemes · 01/04/2021 16:23

@Fde9980 there's also another way of looking at it - someone else on MN made this point. If you have the vaccine now and you know what side effects to look out for, you have a good chance of getting any CVST/VIPIT treated because the hospitals are not overrun. Whereas if you wait and there's another "wave" of Covid you could be going to a hospital in chaos where doctors don't have the time or resources to treat you properly. That's why I'm watching case rates carefully. I'll probably still try to get Moderna if I can, although God knows if that will be possible.

OuiOuiKitty · 01/04/2021 16:23

My dh has APS and says he won't get the AZ vaccine. I'm not sure there is an easy answer to this one. I'm concerned about him getting Covid and where I live(not the UK) we have been told if you refuse a certain type that is it, you won't get offered again but it is his choice at the end of the day. I don't know what the answer to it is.

Fieldofmemes · 01/04/2021 16:48

@OuiOuiKitty wow - you won't get another chance? That seems overly harsh and (honestly) counterproductive but I suppose it's to do with vaccine supply. Can he take the advice of his specialist? The doctors I have asked come down on the side of the vaccine (just). But weighing up ones personal risk of Covid (age and have you had it before?) is also important. Covid has a much greater overall risk of blood clots for someone with APS.

moochingtothepub · 01/04/2021 16:56

All the vaccines have had some clotting incidents, they are not much higher than the background rate. Your consultant is the best person to help you weigh up the risks

winkingeyealcoholsuggestion · 01/04/2021 17:38

I think thrombosis uk said the risk of blood clots is much higher if you get covid and they recommend the vaccine. I have lupus anticoagulant too but not had a "thrombotic event" so not group 6 for this or any of my other conditions. I think I would take it when (eventually) offered though.

Cowbells · 01/04/2021 17:52

I thought the tests showed the risk of blood clot from the AZ vaccine was no greater than without it, and no greater than the Pfizer?

Poppydex · 01/04/2021 21:45

I have possible aps never officially diagnosed but I've had several clotting events including a cvst.
I had the AZ vaccine 29 days ago.. literally a day or 2 before all this came out. I'm completely fine but I'm now very anxious for my 2nd.

Also my dad has an aneurysm in his brain (huge one) and he's been fine. He also had his 29 days ago.

Fieldofmemes · 02/04/2021 00:05

17 more cases of CVST have been reported this week in the UK. Which sounds bad... or am I overreacting?
It's only been reported in the FT - I'll try to link it but it's a subscription link so might not work:
on.ft.com/3fDUEJd

SaskiaRembrandt · 02/04/2021 06:12

There is a risk of clotting with the other vaccines too.

I have Lupus and asthma, I have been vaccinated (AZ), the risk from being vaccinated is minimal compared to the risk from Covid.

Circumlocutious · 02/04/2021 06:13

[quote Fieldofmemes]17 more cases of CVST have been reported this week in the UK. Which sounds bad... or am I overreacting?
It's only been reported in the FT - I'll try to link it but it's a subscription link so might not work:
on.ft.com/3fDUEJd[/quote]
Who knows. If you look very deliberately for something you can start to see more of it. But I do wish the MHRA would release data on who’s actually being affected, or even data on the demographics of who’s been vaccinated with AZ so far.

fabulous01 · 02/04/2021 08:59

I thought briefly about whether I should be concerned. But the odds would be very bad luck. I want to see family and do normal things so I got the jab. Had no side affects

FuzzyPuffling · 02/04/2021 10:46

Me.
SLE and APS. My rheumatologist was very definite - " as soon as you are offered the vaccine - any vaccine - take it."

I am fine.

Lucyk1 · 03/04/2021 00:38

I was diagnosed with Lupus anticoagulant and I've also had covid. I'm not taking this vaccine.
They did not include people with blood clotting conditions in their trials, so I feel as though no Dr or researchers actually know the answer to what will happen, until people like us get the vaccine. I'd rather not risk it.
I was told from the consultant I was lucky. APS is made up of 3 antibodies. I was missing 2 and only have lupus anticoagulant. I was told from the consultant and several GPS that if I had no more babies, then I'd have nothing to worry about as I had the non serious antibody which doesn't cause all the problems like the others.
Also, there's no reason why all the other vaccines won't cause clotting either. It's already been said they all probably will... And if you go for that one coming out this month, no one again has recieved it with blood disorders so your being a Guinea pig.

Lucyk1 · 03/04/2021 00:45

I should probably say. With covid... I didn't end up on a ventilator or oxygen etc. I wasn't classified as serious, but did end up in hospital because I felt like a couldn't breath. My oxygen levels were 100%...better than most athletes I was told. People giving oxygen have to be below 90. Most are 80 or less. I definitely would say it has been the worst part.
I've had this feeling before last year though from March until Aug. I'm starting to wonder if I've had the original covid then caught the Kent version in January. Very same symptoms except for January I lost all smell and taste.

OpheliasCrayon · 03/04/2021 07:38

If I didn't have serious allergies I think I would just go ahead and get it. The clotting thing was the final thing for me but I'd long since decided not to have it. Im in group 4 as was told to shield but I never did and I've worked throughout as an SEN teacher. I then got offered it from work as I work with vulnerable children - I really do want the vaccine for this reason , not for myself as I feel such a feeling of responsibility to the children I work with...but my allergies are so severe and dangerous I just can't do it. I think if APS was my only factor i would go ahead . (I've considered this more since my first post!)

pommedeterre · 03/04/2021 14:35

I have never met anyone else with APS! Im ridiculously excited by this thread.

I have APS and am on lifelong warfarin. I had my first dose of AZ over 6 weeks ago, before the clotting reports came out. I presume that as I am anti coagulated I am well protected and am not worrying.

Is everyone else not on anticoagulants as a matter of course?

Poppydex · 03/04/2021 14:42

I'm on apixaban and had the vaccine 4 weeks ago no problems

AllTheWayFromLondonDAMN · 03/04/2021 14:46

Yes, I have and I had the AZ vaccine. I spoke to my GP first who advised me to up my aspirin regime and supplied me with a few days worth of klexane. I was nervous, but ultimately the risk is smaller than that of the combined pill, which I was on for years without even considering there was a risk (or without taking any blood thinning precautions).

Ultimately the risk of having Covid for me was about becoming very unwell with post viral illness (I also have Fibromyalgia, so I don’t need any help when it comes to post viral illness) as well as all of the other risks associated with Covid. But I did make sure to speak to my GP before I had the vaccine- they know you better than anyone and your whole medical history- so I recommend that.

FuzzyPuffling · 03/04/2021 16:14

I ought to be on aspirin, but because I also have kidney issues all anti infammatories are out.

Lucyk1 · 03/04/2021 16:44

@pommedeterre

Im not on any medication for mine. Neevr met anyone with it either.

persister · 03/04/2021 17:22

I have APS and take aspirin for it. I had my first AZ vaccination 5 weeks ago and had no issues at all, will happily have my second AZ vaccination when it comes round.

It's my understanding that I'd be at considerably greater risk of clotting problems if I'd caught Covid than from the vaccine so I'm happy I've done the safer thing in having the vaccine.