AZ query/ APS

[Chris1802p]

Hi all,

I apologise if this has been asked a million times already, I’ve had a trawl through and can’t find anything definitive.

I tested positive for lupus anticoagulant twice 7 weeks apart a couple of years ago, but negative since, otherwise I have psoriatic arthritis. I’m 48 yr old female. No history of clots. Rheumatologist explained that whilst I do not have an APS diagnosis, it can’t be ruled out either. I am not on anticoagulants.

Is the advice to take any vaccine or try to not have AZ? I’d be quite happy to wait a bit for the other vaccines to be more readily available.

Any advice welcome. Thank you!

[Treetop33]

I've been in a similar situation with an APS diagnosis. I'm having Pfizer as my second dose rather than AZ. There is guidance to that effect. You can organise it through your GP.

[Chris1802p in reply to Treetop33]

Many thanks Treetop

[HollyHeski Administrator]

According to Prof Hunt, leading APS haematologist, last week, I asked her the same question for my daughter (32), who may have APS but no clotting event, her advice was to have the vaccine whatever was offered to her.It may be worth you talking to your Rheumatologist or your GP?

[Chris1802p in reply to HollyHeski]

Thanks Holly

[Cinn987]

I haven't a clear answer except to say your consultant will know best and have your full history for a rounded view of what is best for you. We are all so different. On a personal note I had the AZ have been poorly ever since lung pain short of breath ear and eye problems, rash plus many more so advised not to have second AZ. GP then rang and said have Pfizer but didn't pick on allergy and consultant advising against it? ??? I thought mixing vaccines was still experimental and being trialled. Feel left a bit high and dry at the moment. I'm just picking up now ten weeks post Vax. Don't want to put you off just reiterate that best be guided by your consultant? Be interested to hear how you get along. It's a stressful time for all. Take care

[Chris1802p in reply to Cinn987]

Oh dear, sorry to hear of all your problems. I have read there are a number of people who have had 1st az are now having 2nd Pfizer so I don’t think mixing is a problem but can’t comment on the allergy bit.

I’m switching between private consultant and nhs at the moment so can’t be bothered trying to ask them! 😀.

I’ll ask GP and report back. Thanks and good luck!

[Cinn987 in reply to Chris1802p]

Bit of a minefield isn't it. Suprised about the mixing of vaccines and thankyou for your reply. I hope you have some clarity very soon

[mariamoo1]

To anyone here worried about having the Covid astra jab, can I re assure you that it’s fine, I have had both jabs with no side effects, not even a sore arm. Also I volunteer in re search for Bristol university. A couple of weeks ago they asked me to take part in a study about Covid virus antibodies. I agreed, they then sent me a finger prick blood test kit , via the post. I did the test sent it back to their labs. Today I got my results via email.Blood antibodies: clearly detectable. Meaning that although I have, APS, lupus and more... that my immune system has built up antibodies against Covid 19. I will still follow government guidelines for safety. But I just thought I would share and hope this may reassure you.

[Muleteer in reply to mariamoo1]

Thanks for your post. At this point I think the balance is in favour of having the 2nd AZ. Only because I went asap, if I had waited could have had Pf and my concerns are really not over possible reaction having had the 1st one. Interestingly the plumber who has autoimmune problems was quite ill with 1st but not 2nd. I am hearing that Pf might offer better protection against variants which is why the government are ordering a UK top up amount of Pf. Given the now low risk and rolling on of vaccination I think we will only have a bump come winter. I am not throwing away my mask or closing windows and certainly not getting on an aeroplane. Tourist season approaching here in Cornwall but we are inland and our Council were very diligent last year.

[MajorKrimes]

I had both Pfizer shots. No negative reaction whatsoever except day of sureness at injection site. Have DTTs Factor 5 and APS/Hughes syndrome. On 20 mg Xarelto. Lots of joint replacements over the years, so joint pain at most every joint.

But everyone is different I’ve found and there seem to be very, very few knowledgeable Dr. s in this area—-at least in U. S.

[KellyInTexas Administrator in reply to MajorKrimes]

Thanks for information, MC

[MaryF Administrator]

I urge anybody in your situation to have that chat either by phone or email with your GP and your main consultant. I did this. I am really allergic to vaccines and drugs in general, but I have had one dose and will have the second, it was not easy for me as I have Lupus plus Psoriatic Arthropathy plus also Stevens Johnson Disease, plus other things, so I had the right help in order to calm the reactions I had. Best of luck to you. MaryF

[LesliT]

HiI’m the same as you to some extent, I test positive for APS but with no clotting / miscarriage history. I was treated with heparin during pregnancy but other than that I take aspirin (I also take Hydroxychloroquine for other autoimmune stuff). I found my GP and rheumatologist unhelpful in terms of discussions about having a different jab to AstraZeneca. I eventually decided any jab was better than not being protected. I’ve had my first (AZ) jab recently and I am totally fine x

[Chris1802p in reply to LesliT]

Thank you. What I find so annoying, is other jabs ARE available, and other people are having them, by pot luck! It’s very annoying. Anyway, good to know you’re ok.

[LesliT]

Yes I totally agree. My GP agreed to but then said he only had AZ and so I would have to sort it out myself 🧐. He was wrong because obviously can't choose which vaccine you will have when you ring the national number. I have found it unnecessarily stressful and a little upsetting, if I am honest, when my GP could've done something about it.

[Chris1802p in reply to LesliT]

I heard from my GP today and seem to have struck lucky as per my update below

[LesliT in reply to Chris1802p]

that’s great news!

[Chris1802p]

***Update**** i dropped a letter at my GP’s a couple of days ago explaining my concerns and that I would prefer not to have AZ if possible. My GP called me back today and was very sympathetic and luckily for she is willing to help me book onto the list next time they have a schedule for 1st vaccines for Pfizer. Which won’t be for a while. She even said she would probably want to do the same in my position. I realise this doesn’t help all those with unhelpful GP’s- she is going above and beyond- clinically she doesn’t need to do this for me and would be well within her rights to tell me to just take whatever vaccine I am offered. But as she said, there is more than one vaccine available, so if you can easily have another one, you may as well, which was my thinking.Thanks for your help everyone.

[chrissybell]

After having my first AZ jab in Feb and having no reactions except a tender arm for a day, I looked at what Beverley Hunt had said after the issues arose with clotting and decided to have the 2nd AZ (of which I did 2 days ago, again only tender arm. Also asked re my daughter (tested just into APS levels diagnosed positive by Prof Khamashta, but then next consultant at Guys and St Thom's decided she didn't have it (low levels only) and my GP will jab her early (she's only 24, but said he wouldn't jab her with AZ, but with Pfizer (next week) as the protocols in the UK aren't allowing under 30's to be jabbed with AZ because of the 0.04% of issues with clotting). He was happy to give me Pfizer, but as I'd have to wait until they got their Pfizer stock, together we decided to go for the AZ upping my protection massively as I'd had no reaction to the first (as Beverly Hunt said just get jabbed), and I'm medicated re clots also for life as had multiple bilateral PE's on diagnosis (like hundreds of clots covering my lungs, and pleurisy) so we made a decision to covid cover me. All good.