Guidance from MPN specialist needed please, on w... - MPN Voice

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Guidance from MPN specialist needed please, on whether to have Astra-Zeneca 2nd dose.

SDJD
SDJD

Hi, I’m due my second Astra-Zeneca vaccine in the next couple of weeks. Would welcome any updates from MPN specialists whether we should still have it after today’s MHRA’s latest guidance.

Here is a paragraph from Gov. UK that I have just read:

‘’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.’

Maz, please could you find out for us as there will be many queries about this. Thanks.

Suzy

33 Replies

Hi Suzy I would also like to know if it’s safe I have my second jab next week and feeling a little worried about it now .Best wishes Poppy

Yes I'm concerned too. I had my second AZ vaccine earlier today as this was announced later on in the afternoon.

Hughley
Hughley in reply to Jazzyb50

I am also very concerned as one of the professors said that people who have blood disorders who are liable to clotting should contact their doctors before having the Astra Zeneca jab but it was unfortunately too late to ring the doctor and my second jab is due tomorrow.

Yes also concerned. Not sure I’m in favour of having 2nd jab of another make as suggested by someone on internet (doctor) as this has not been proven to be either effective or safe. Would like some fed back from MPN specialists . If had normal reaction from 1st jab , fever, chills etc for 24hrs then fine, it means we will be fine on 2nd one.. On Aspirin and HU for ET Jaks2.

The guidance is still get the 2nd regardless of age if you have had the AZ vaccine. The only exception being those who may have had a blood clot issue after the vaccine.

In light of yesterday's announcement I can understand people being concerned, but studying the facts the risk of blood clots if you get covid are many many times more likely than having recieved the vaccine.

I still think the media coverage its receiving is making people more concerned than maybe they need to be. For example a female in her 20's would probably be very concerned about having the AZ vaccine now, but how many of the same group would be concerned about taking the contraceptive pill? Yet the risk with the latter is far greater and proven while the risk with the AZ is still not proven but a possibility.

I'll probably have a conversation with my consultant at my appointment next week but I fully expect him to say have the 2nd dose.

I do understand people seeking reassurance though.

SDJD
SDJD in reply to Paul_1971

I’m inclined to agree with you. It’s just a bit scary when you read about the vaccine targeting platelets, albeit rarely. Our platelets have enough problems of their own!

Kari1961
Kari1961 in reply to Paul_1971

I agree Paul_1971. I heard yesterday that there is a 1 in 600,000 chance of developing a blood clot with the AstraZeneca vaccine and a 1 in 100 chance of a woman developing a clot from the contraceptive pill - I'll also be speaking to my consultant on Monday. I'm having my FBC today, so it will be interesting to see what my platelets are doing - they were 185 before the AZ Vaccine in February.

Paul_1971
Paul_1971 in reply to Kari1961

Have mine tomorrow but my last one a week or so after my 1st Jab showed no issues.

Im sure Mazcd will be able to provide some reassurance from the experts, but i fully expect it to say the risk of not having it far outweighs the risk of having the vaccine.

In January the death rate in the UK 'per million' from Covid was 16.5 people 'each day'. For me those sort of stats put it in perspective.

Hi I think the quote says it all it’s far more benicial to have the vaccine. I was part of an MPN video support group on Tuesday. The nurse has links with Prof Harrison. I’m sure she would have mentioned concerns but she didn’t. So my personal opinion is have the vaccine. I will be.

Good luck with your decision.

Some fab info on bbc news this morning regarding AZ1- headache not controlled by paracetamol - consult doctor

2- this headache could develop up to 21 days after the vaccine.

3- if you have already had 1 dose of AZ and you were fine then all is ok for the second.

4 - there are been severe side affects after flu jabs.

Hope this helps xx

As Wyebird has said, as I read it, if you have had the first with no issues then there is no problem having the second AZ vaccine. The rare blood clot issue is related only to the first AZ jab, and if you're fine then you should not worry. I've now had my 2nd AZ jab, was absolutely fine. Hope you feel safer to go ahead, x

As you can see you’re not alone worrying. So am I.. think I’m getting hypochondriac!! All think considered, I’ll go ahead with mine that is on Monday.. Bonne chance! Let’s be brave and positive!

Mazcd
MazcdAdministrator

Hi everyone, I have just posted guidance from the MPN Voice medical advisory committee:

healthunlocked.com/mpnvoice...

paintbox
paintbox in reply to Mazcd

Hi Max I was just scrolling through replied to see if this had been shared as I was going to mention it (I'd read the MPN Voice email before this post):

"COVID Oxford Astra Zeneca vaccine and risk of blood clots

The MPN Voice medical advisory committee wants to share with our community the following:

1. Thrombosis associated with low platelets is an exceedingly rare event in patients receiving the Oxford-AZ COVID vaccine and causal relationship remains unclear.

2. There are no confirmed reports of any specific platelet or thrombosis problems in MPN patients relating to the COVID vaccine.

3. MPN patients may be more at risk of dying from and complications of the COVID infection than the general population.

4. The risk-benefit is hugely in favour of proceeding with the COVID vaccination, first or second dose.

5. Patients under 30 will be offered an alternative to the Oxford-AZ vaccine in line with MHRA/JCVI advice.

6. The MPN community are keeping up to date with the literature and worldwide colleagues on this matter and will update the advice if/when new information becomes available."

In relation to the second point, I thought it might be useful to feedback to the advisory committee that I experienced a drop in platelets following my AZ vaccine.

I emailed my haematology nurse yesterday to discuss the fact that my platelets dropped to 446 straight after the AZ vaccine which is the lowest they've been since June 2011. Previously they've remained stable around the upper 600s/ 700s since April 2020. My nurse is arranging for another bld test to compare & I'm going to see my haematologist in May anyway.

I was told that much lower drops than mine had been seen following vaccination (I don't know if this refers to MPN patients in my area or generally) but as none are in association with thrombosis there's no immediate concern. Nevertheless I thought it was relevant to the point made in this guidance and may be useful in building a bigger picture of understanding how the AZ vaccine impacts on MPN patients.

Perhaps others have had a similar experience?

Kind regards.

Hannah52
Hannah52 in reply to paintbox

I have ET and had a blood test 2 days after I had the Pfizer vaccine. My platelets were the lowest since November 2015

Yes, similar situation to myself. A week ago I found out I’d had a drop of platelets from 709 to 428. I had my first AZ vaccine end of February. 709 had been the lowest since 2019, and the only drop I’d had since starting in October 2020 on weekly and increasing interferon doses. I’m just interested! Like yourself my next haemo visit is in May.

Oh that is very interesting isn't it! We must touch base again with each other after our haem appointments in May. Very fascinating.

SDJD
SDJD in reply to Mazcd

Thanks Maz. X

Thanks everyone for replies. It’s definitely a topical subject at the moment. We are so lucky to have the vaccine and should go ahead with 2nd AZ one unless we hear otherwise from the haematologists. X

I have been offered AZ twice and politely refused. I am very worried as I previously had a saggital 1 venous sinus blood clot on brain. This seems to be the clots that people are presenting with post AZ. I am worried about my risks. I am on warafin & aspirin also. Any feedback would be very much appreciated.

MPNBlog
MPNBlog in reply to Alfie1234

Hi Alfie, I can not give medical advice, but my understanding of current advice is that anyone who has had CVST (which I think your condition is) should not have AZ vaccine. Also that you should receive medical advice to have any Covid vaccine. I think your caution is well advised. I would suggest that you need very specific medical advice for your situation. If I were you I'd be getting in touch with my doctors before you make any decision. Stay safe. Best wishes.

Alfie1234
Alfie1234 in reply to MPNBlog

Hi MPNBlog, I called my team again & have been advised to get AZ. But my gut feeling still not good so I will wait for different brand. Thanks for your response much appreciated 👍

SDJD
SDJD in reply to Alfie1234

Good luck Alfie, keep us updated.

MPNBlog
MPNBlog in reply to Alfie1234

Apologies for a long post, but I felt the need to provide some information about my comment above re Astra Zenica.

I live in Australia and the regulatory authority, the Theraputic Good Administration (TGA) (the equivalent of the FDA in America) have said as a precautionary measure, people with previous CVST are advised not to get Astra Zenica Vaccine. The Australian Technical Advisory Group on Vaccination says not to get any Covid vaccine until more information is available. Here are the links if you need them:

Updated ATAGI statement for healthcare providers on a specific clotting condition being reported after COVID-19 vaccination | Australian Government Department of Health

2 April 2021: At the bottom of this link it says:

“ In those with a past history of CVST or heparin induced thrombocytopenia (HIT) we continue to advise not receiving the COVID19 vaccine as a precautionary measure, until further information is available.”

26 March 2021: People with rare blood clot disorder ‘should not have COVID-19 jab’ (theaustralian.com.au) The first sentence here says: “The Australian Technical Advisory Group on Vaccination has recommended that people with a confirmed history of a rare blood cerebral blood clotting disorder should not be administered COVID-19 vaccines.”

Someone on this thread with previous CVST has had Astra Zenica and is fine. But you aren’t alone in your concerns. Many countries are recommending limiting AZ use for certain populations whether or not they have had CVST previously, because of unique clotting concerns.

The report from the MHRA in the UK says: “The risk of having this specific type of blood clot is very small. Up to and including 24 March, we had received 22 reports of cerebral venous sinus thrombosis (CVST) and 8 reports of other thrombosis events with low platelets, out of a total of 18.1 million doses of COVID-19 Vaccine AstraZeneca given by that date. There were no reports for the Pfizer/BioNTech vaccine.

gov.uk/government/publicati...

So waiting to be offered a different vaccine such as Pfizer would seem like a reasonable decision on your part.

[Though I must add that nothing is without any risk, and thromocytopenia following Pfizer and Moderna has been reported. (Thrombocytopenia following Pfizer and Moderna SARS‐CoV‐2 vaccination - Lee - - American Journal of Hematology - Wiley Online Library ). ]

BTW – I had a first AZ vaccine on 22 March and am pro-vaccination. But I believe it should be informed consent. You are in a specific risk group and I think your hesitancy is warranted.

A challenge you will have is how to asses your risk, such as how likely you are to contract Covid, which has high risks too. In Australia there is almost no community spread of Covid unlike in the UK/Ireland, so it is an easier decision, and could influence regulatory advice to Australians.

When you decide to get vaccinated, the last para of the AJH article above suggests aggressive monitoring of people such as yourself. Here’s a quote: “The opinion of the Medical Advisory Board of PDSA is that in most, but not necessarily all, patients the benefit of vaccination exceeds the risk of exacerbating ITP (immune thrombocytopenia). At this time, for patients with ITP it appears reasonable to obtain a baseline count before vaccination and then obtain additional platelet count(s) following vaccination based on patient clinical and treatment history. In patients who present with severe thrombocytopenia soon after vaccination in the absence of other likely causes, we believe it would be appropriate to pursue aggressive treatment for presumed ITP. “

So be aware of all the symptoms you need to monitor after vaccination and seek medical advice quickly if needed. It is an on balance decision for your circumstances, and I hope that those supervising your medical situation are supportive of your concerns. Stay safe. All the best.

Alfie1234
Alfie1234 in reply to MPNBlog

Wow MPNBlog, thank you so much for your detailed response. Very detailed & informative. I will most definitely not accept AZ. I need to read up on some of your points in regards to other brands etc.Much appreciated

A

Alfie I’m no expert but I would say you made the right decision definitely. If I was you I would talk to your Dr. Stay well & safeBest wishes to you xx

Alfie1234
Alfie1234 in reply to valezio

Hi Vakezio, I am awaiting a callback from team in regards to my worries. But even if they recommend get the AZ my gut is saying wait for another brand to be offered. Warm regards x

valezio
valezio in reply to Alfie1234

Hello Alfie, thanks for reply. I tend to agree with you regarding waiting for another brand to be offered. That does sound like the best option in your situation. I hope the team get back to you soon though. Thinking of you.Best wishes x

Thank you Maz for all your information I will go ahead and have my 2nd jab this afternoon

HiHad e-mail at work(NHS) with the JCVI statement about the AZ /Oxford vaccine- 'There have been no reported cases of the unusual clotting issues in patients after having the 2nd AZ jab so they are recommending people should go ahead with 2nd jab to boost immunity'

Hope that helps as their general guidance but obviously isn't specific for our conditions. All the weird clotting issue cases so far have been after the 1st jab only.

Take care

Heidi

CVST was the thrombosis that led to my ET Jak2+ diagnosis with most of the clot still there today. I emailed my Haematologist yesterday regarding whether I should take the second AZ vaccine and was told I 100% should.

Hi I have had both my AZ vaccine had my 2nd 1 about 2 weeks ago and I've been fine with both doses thought had share this with you Xx

I think the issue is there’s not enough data yet to make any judgement as to the reasons. It would seem sensible for all of us in this group which is more high risk not to have AZ. Seems like other medical regulators are making this decision for the wider group, and if we are at more risk then I don’t see why there’s a debate.

We should not be taking a risk if it’s not required. Why not follow the french, German, Dutch guidance and not have AZ as a second jab and have something else ?

Or am I missing something. Seems pretty obvious tbh.

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