Advice for Lupus patients under 30 and the Oxford/AstraZeneca vaccine

[gingkoleaf]

Today the UK government announced that the Oxford/AstraZeneca (AZ) vaccine will no longer be offered to those under 30 because of a very rare blood clot side-effect.[1]

I have SLE, am under 30 and have had one dose of the AZ vaccine. Given that about half of people with lupus have antiphospholipid antibodies which makes them prone to blood clots,[2] is it safe to take the second dose of AZ?

I know the news is still very fresh, but any expert guidance from Lupus UK would be helpful to other young lupus patients in the same situation.

Sources:

[1] bbc.co.uk/news/health-56665517

[2] hopkinslupus.org/lupus-info...

[happytulip]

I agree. I'm 39 and haven't had any vaccines yet as I've been flaring but now think that I'm not keen on having the AZ vaccine.Surely people who have conditions that make them prone to having clots should avoid the AZ vaccine regardless of age??

I'd like more info on this too.

[H134 in reply to happytulip]

Hi, Im 34 and currently breastfeeding Ive heard that someone else I know had a really bad reaction to the AZ vaccine. Im not keen on getting this done yet until I know its safe.

[Shann07]

Hi, Im 43 and Ive had my 1st AZ vaccine, but Im worried about the 2nd dose. I have a blood clotting disorder, protein S deficiency and Ive had a clot in my lung, so Im on warfarin. Ive tried to contact my Rheummy as my 2nd jab due next week! Question is if its not safe for some of us where will that leave us in terms of getting fully protected? My GP told me I couldnt get Psfiser as I had anaphylaxis in the past so thats why I had to have AZ! Also since I had the vaccine Ive had the worst flare of my life that has lasted over 9 weeks, Ive never experienced anything like the pain Ive been having, its only started to ease off this past week and I feel slowly like my normal ‘lupus’ self, Im due for bloods etc next week at the hospital as I was crying in pain and couldnt sleep but thank god I think the flare seems to be passing now. I really think the vaccine put my lupus into overdrive, my body’s immune response just went nuts, severe pain, rashes everywhere and weird lumps on my body! I would dread going through that again, I was so depressed and scared the pain would never stop 🙈 And Ive been in hospital before with lupus complications but this flare was defo the worst. Just wondering has anyone else flared really badly since the vaccine 🤔

[nutler in reply to Shann07]

I had the AZ for the same reason. I don’t think mine was as bad as yours but I couldn’t get out of bed for 2 days I had so much pain, it was like everything that sometimes hurts all hurt at once on top of feeling like flu then the 2 days after that I couldn’t walk too far and couldn’t leave the house. I’m still a bit blur, my arms hurt like a bit of a flare up but that’s manageable. Had mine nearly 4 weeks ago.

[Mystik in reply to Shann07]

Hi so am I m 59 and I too m worried the second one ☝️ I have. Sinus infection don’t about the 2 dose

[LupusandSjogren]

I am in the same boat and too scared to have the 2nd dose especially as the first dose gave me a nasty flare up for a couple of weeks

[panther50]

Yes it’s spectacularly unhelpful to announce this without thinking of those with blood clotting conditions, who are bound to ask this question.

Lupus itself doesn’t put you at more risk of blood clots, but about 50% of people with lupus have Antiphospholipid antibodies which do affect blood clotting.

The poor GPs will be inundated again. This is what the government website says: “As a precaution, administration of COVID-19 Vaccine AstraZeneca in people of any age who are at higher risk of blood clots because of their medical condition should be considered only if benefits from the protection from COVID-19 infection outweighs potential risks.” 🤔

I was ok after mine (mild side effects), I am over 50 and I will be having my second. I have SLE but not APS. My risk risk from COVID still far outweighs the 4 in 1 million chance of a v v rare blood clot.

[gingkoleaf in reply to panther50]

Thank you for the correction, panther50. I've edited my post to say that about half of lupus patients have antiphospholipid antibodies, which affects blood clotting.

[Tnmagnet]

I have had both AZ i have APS and lupus and was okay. But my INR is not stable at the moment so extra runny blood probably helped.

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[panther50]

Thanks for doing that. You may have seen Paul’s post at lunchtime to say the excellent team at Louise Cootes are looking into the advice for people with APS. I think they will be updating us as very soon.

[Jolevans]

Hi, I have had the first AZ vaccine and I was thinking more on the lines of I would be safer as I am already on Anticoagulants.

[Shann07 in reply to Jolevans]

I thought the same but someone raised this on morning tv and the professors advised that this isnt always the case, as the kind of blood clots its causes happens through a variety of pathways & blood thinners wont neccessarily prevent the clot, its more an auto immune response to the vaccine that forms the clots.

[Bumblebee321]

I am 36 and just had my 2nd az dose, both times i personally didn't get a sign of any reaction. bloods (routine) have been done near both and all ok. i have know so many variable reactions from people that are 100% healthy, my comment is probably un-helpful but we all run a risk and each one has a side effect, but i am grateful for my doses and i felt the end picture was worth it x