I am 74 yrs, old and had first dose of above on 8th Feb. The latest news about the blood clots is concerning. I am triple positive for APS, two thrombotic events, one before diagnosis and second 5 years after starting Warfarin range 3-4. I listened to Jonathan Van Tam at three today, but there was a man speaking after him, that said to take the second dose unless you had a clotting disorder. Did anyone else hear this and is there any advice out there from a Consultant/Specialist.I dont have one at the moment unfortunately to discuss this with. Also I am not on Twitter to hear any chat. Thank you. Zamalek
Astra Zeneca Vaccine: I am 74 yrs, old... - Hughes Syndrome A...
Astra Zeneca Vaccine
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Hiya, I would urge you to seek the advice of your GP and your main Hughes Syndrome/APS consultant, there are formal statements being put out on social media and the news channels. I had it myself with high high allergy risk and on Aspirin. I understand your worry, and I hope you can be reassured. I will be going ahead with my next dose of the same vaccine. I believe the advice may change for younger people, so perhaps my children/young people will have a second dose of something else. MaryF
Thanks Mary, the professionals speak of blood clots with thrombocytopenia, isn't that what occurs in APS sometimes? I am without the reassurance of a specialist at this time. There must be hundreds/thousands of us with this query surely?
It’s very rare. There are formal statistics on this, yes. There was a news conference in England on this issue this evening in the UK.
Do you have a way to watch the high lights of it?
To put your mind at ease, if you did not have any problems 5-28 days post first vaccine, you are past the period expected to see problems.
For further clarification on second dose, please confirm with a pharmacist of a vaccine center perhaps, but as I understand it, the reaction should not happen with second dose if it did not happen with first.
Again, please confirm with an expert.
Yes, I understand your concerns, I think more and more news will come out, probably even today, do email your GP or ring them, once you hear up to date advice, we will continue to update the forum and our charity website over on GHIC, keep an eye out. MaryF
Do you mean APS UK?
I must admit I'm really spooked, my gp hasn't been helpful at all , I've had my first AZ and due my second anytime soon, I suppose it's all so new no one has all the answers but I'm really scared 😟 and just don't know what to do !
Keep asking, and also watch out for GHIC and various other charities putting out statements. I am due my second dose, and it is very tricky for me as have only just recovered from the first one, however my children who are very much under 30 had their first dose ages ago, but now will probably be considered for something else, what a minefield! I will let you know if I hear anything MaryF
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thrombosisuk.org/downloads/...
From Prof Beverly Hunt, she posted this on Thrombosis UK
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Hi, I'm in the under 60 group and triple positive, I have had my first dose of Astra Zeneca too.I am under Professor Hunt, who is leading APS thrombosis specialist in Europe.
Her advise is still to encourage having the Astra Zeneca or the other vaccines as the risk of blood clots with Covid is so much higher than with the vaccine.
I feel already being on anticoagerants and anti platelets I have some extra protection. I will be having my second dose.
My concerns are more for my daughter (32), as she is in the danger age group. I'm hoping she will be given alternative to Astra Zeneca but if not, then I would still want her to have it.
It would be worth talking through your concerns with your GP or docter at the vaccination Centre?
Hi, I have APS and a history of CSVT. I’ve had recent check ins with both haematologist and neurologist, the latter yesterday. Both still advised the AZ vaccine (I’ve already had the first dose). The neurologist said to me that the clotting mechanism is different to the APS one. But each of us is different, so worth confirming with your own doctors.
Hi, I’ve just asked similar in the Behcets forum and had this link posted to me which is helpful: nytimes.com/2021/04/02/worl...
I’m also 74 and had my jab in February but I had the Pfizer vaccine
I posted on the APS Facebook page and there is some discussion. I am not due for 2nd jab until 2nd May so waiting. Basically if it hasn't killed you the first time, you're probably safe. Most reaction is after the 1st vaccs for all reasons, although of course the number of people in Europe who have had second jabs is low and particularly so here in the UK. I have not had a definitive answer on low platelet and clots for APS but from what I am hearing the reaction to AZ is very unusual. Sometimes Heptarin and Warfarin can trigger clots and this is, I think, what happens with the vaccine.The other question being rightly raised is what really is the incident level in under a certain age, given again that the majority of vaccination has been of older people. This is a very, very rare reaction and only being seen because of the huge level of vaccination.
No results have been published yet on mixing vaccines so clinicians are advising against it. If the government directed this, as it did in UK with the 12 week interval then they effectively absolve the pharmaceutical industry of legal action responsibility, I think they may have already done this anyway. I think my choice might be not having a 2nd jab. Given that clots are a real risk from getting Covid-19 and not being able to know how much protection my 1st jab gives and for how long, I think I should take the jab. A friend had a full blown shock reaction to her first jab and won't be able to have the second.
I have never heard of Warfarin triggering clots, surely it's the opposite.
I agree...Warfrin is used to prevent clotting...at least thats what my Consultant told me. I have been in hospital recently with an APS flare up and my Consultant advised I should take the Vaxine...I am getting the AZ....I also discussed this yesterday and she said yes being on Warfrin would help. But I suppose everyone is different .
Yes, Warfarin is used to prevent clotting, that doesn't mean there aren't rare reactions to it that include clotting. See e.g. dermnetnz.org/topics/warfar...
Heparin is also used to prevent clotting, but again can trigger clotting in rare cases - lookup Heparin Induced Thrombocytopenia ( bmj.com/content/350/bmj.g7566 ). Note that I have already seen it written somewhere (lost the page now) that the suspected vaccine clotting reaction is thought to be possibly same mechanism as the Heparin one.
Pretty sure (looking at rough incidence numbers on the vaccine) that the vaccine problems are actually much rarer than the problems with Warfarin or Heparin, so if you take Warfarin or Heparin, then...
In short, medicine is complicated.
I'm concerned too. I have lupus and APS and have already had the first AZ shot, and I feel I just don't know enough for a second. I asked my GP and they just threw a lot of cliches at me which wasn't helpful, and said I couldn't start again with another vaccine, so it was either the second dose of AZ or nothing. I'm speaking to the rheumy department today. But I expect no-one knows enough yet and the NHS is too much dictated by government policy (which presumably wants it to continue because they've bet everything on the vaccine roll out rather than invest in effective public health measures).
Good morning, I am 71 and very concerned about the recent developments. I remember being so excited about my first vaccine but now that the second AZ is due I am fearful and wary. I will wait and see what the next few days bring as to whether we will be granted the option to chose another vaccine other than AZ for our second vaccination. I feel that if the under 30s are to be offered the option then that should be extended to others. I guess that the government won't be pleased at offering the option as the logistics and infrastructure isn't in place so am not holding my breath! My second vaccination is due in a couple of weeks so I will watch how things unfold.
Given that some are talking about possible link mechanism being similar to Heparin clotting reactions, if you didn't clot in response to first vaccination it is even less likely you will clot in response to second one. Pretty sure that time from first exposure is part of diagnosis in the Heparin case.
Worth noting that these reactions are so rare it took decades for medical science to figure them out, and they are still way more common than the possible vaccine reaction.
This is why it is a very rare condition. For almost all people the drugs are effective, as will the vaccine be but apparently the type of clots seen are specific and occur. 30 cases in 18 million treatments is way beyond what any trials would have turned up but sufficient to cause some clinicians to suggest a possible link. I do recall experiencing tinitis while on Warfarin and being told it was unusual as it was usually used as treatment.
The JCVI have apparently issued info that says people with APS should not have the AZ vaccination. It’s on the gov.uk site too. I think it means second vaccinations too. There is a video on Hannage Brook Facebook site which is good. But here is a screenshot of the gov.uk page
Further down on that paper it specifically mentions APS, but doesn't say we shouldn't have it.It says we should weigh the potential benefits against the potential risks
I agree. Further clarification is needed for many. But it does mean we shouldn’t just go and have the AZ vac without getting our doctors to look into it. It also means that other vaccinations may be better so we should get one of those unless there are reasons not to have them (eg severe allergy problems).
Thank you for this, do you have a link for this, I cannot find it on the. Gov website.
Thank you for this, do you have a link for this, I cannot find it on the. Gov website.
gov.uk/government/publicati...
It’s the top one on the page
Thank you, I am awaiting my second jab (AZ) I am due a full blood count test, I guess I will time that for two weeks after my next jab and see what my platelets count is, it reads that you cannot mix and match the jabs so I don't believe I have a real choice in the matter, I am 38 so over the 30 mark also I have a few weeks to wait so I will continue to look out for any new information
I have chosen not to receive the astra zeneca vaccine because of my past medical history with Hughes. I have already had three full strokes, and am not willing to chance it. I am lucky I have that choice. I will probably be getting the Moderna or psifer in 2 weeks time. Here in Canada, we are behind the rest of the world in the vaccinations!
Ok someone needs to explain to me the rational behind getting this "vaccine". First, the reason why you get a vaccine is so that you don't GET the virus. This is not the case with Covid vaccines. You can still get the virus. Also, you can still transmit the virus to others if and when you do get it. So why get it?
I won't bother to get into the fact that Big Pharma has completely bypassed the standard FDA clinical trial protocols. Some on this site won't consider ANY medication, supplement, or treatment for prostate cancer without a double blind study that proves efficacy and safety. But now we can't wait to get in line for these vaccines that have no short or long term studies? And no one on this site says anything? (maybe I missed it.....or maybe these replies are banned? ) And there are many doctors and scientists that are raising the red flag on these vaccines regarding side effects at great risk to their jobs and careers. IMHO, the risks of accepting a covid vaccine are greater than getting covid itself, especially if you've boosted your immune system (see below).
In addition, there are effective treatments available. Find an excellent covid prophylactic and treatment protocol here: evms.edu/media/evms_public/...
Treatments are personal decisions and should remain so. I don't judge anyone for a treatment that they undertake. With these vaccines, there is NO informed consent. I'm just offering a little of the "information" for those who are interested. I certainly don't mean to offend.