Is it safe to take vaccine? I am an MPN patient

[Aby1990]

Is it safe for MPN patients to take vaccine?

Does it work in pur body?

[Otterfield]

Many MPN patients have had it and it is considered to be safe for us. If you are concerned perhaps you could chat to your consultant or specialist nurse for reassurance. As for its effectiveness in our case, I understand that is being investigated. Personally, though vaccinated, I intend to continue to live very cautiously.

[IrishHiker in reply to Otterfield]

Totally agree. In Ireland I read today that 5% of the recent cases diagnosed had been fully vaccinated. “Caution” is my new middle name.

[Dazakella2010]

Hi…. I have ET JAK2 + and I had my first dose the beginning of January…

[cmc_ufl in reply to Dazakella2010]

Any drop in your platelets at all? Curious.

[Dazakella2010 in reply to cmc_ufl]

No, everything was fine and I’m on peg..

[Wyebird in reply to Dazakella2010]

Glad to know that. I was on anagrelide and hydroxi when I had my AZ jabs. When my booster comes round I’ll be on Peg.

[Superwoman]

I have had both my AZ jabs and have just found that I have antibodies I have ET JAK 2 positive and take Hydroxycarbamide all has been fine.

[hunter5582]

Word is that we should take the vaccine when we have a MPN. I have had both doses of the Moderna vaccine. No issues with it at all.

[Mandy-moo74]

I have ET, and I have had both doses of the AZ, had no issues at all and welcome a booster dose in the Autumn if offered

[Wyebird in reply to Mandy-moo74]

Me too

[NCB1983]

I’ve had both doses of Pfizer and all fine

[Ebot]

Absolutely! It’s really important you have both doses of the vaccines (or the single dose vaccine) as a matter of urgency.

There are still questions about how effective the vaccine is in MPN patients but since there is a chance it will give you some protection against Covid 19 and it’s variants (and reduce the chance of you transmitting the virus to other vulnerable people) you’re advised to take it. And to take the third / booster vaccine when it is offered.

[Wyebird in reply to Ebot]

Well said

[Wyebird]

Hi I’ve had both my AZ jabs. The general thoughts are that the risk of catching Covid and suffering is far greater than the jab. As for us efficacy, in my case I don’t know .

[Wyebird]

Wow so much knowledge. Thank you. Maybe there is much I don’t know about the vaccine. After all the research you made did you actually have the jab?

[Clarke7 in reply to Wyebird]

No both my wife and I had Covid in April, thank God no serious issues, just felt lousy for several weeks. It blew through our church yet nobody became seriously ill. Younger people gif over it like a cold in 3-4 days.

[Ebot in reply to Clarke7]

Unfortunately the experience among my twenty-something daughter’s friends is that while some spent between three and seven days in bed with mildish symptoms, many are suffering the effects of Long Covid - breathlessness, fatigue, loss of taste and smell. It’s really diminishing their lives. Indeed the biggest fear among younger people is the longer term effects of a Covid infection which they recognise would seriously disrupt their dreams and ambitions. And for the increasing numbers of younger Covid patients who make up the current hospital population, long term damage to major organs does not appear to discriminate on grounds of age.

[Amethist in reply to Ebot]

Interestingly, there appears to be some connection between having covid and this causing depleted Vit B12 levels. There have been some studies into this and the similarity of symptoms is quite striking, as noted by the Pernicious anemia society who alerted the UK Heath officials to this, and they gratefully took this on board.

I’m not saying it’s a cure all, but as B12 is cheap to buy OTC , it might be worth a try and see if it helps. If not ,nothing lost. Maybe there vit D levels were low too? It would be interesting if there GPs looked into these things with a simple blood test.

Hope they feel better very soon.

[Amethist in reply to Wyebird]

When the trials are finished and the data has been analyzed by people with no conflict of interest, then I will look at it again. Until then, it’s a no from me.

[Wyebird in reply to Amethist]

With out the selfless act of those participating in trials, determined to help others regardless of their own health there would be no data to analyse.My thanks to all of them.

[Runner999 in reply to Amethist]

They have done the tests - far lower incidence of any harm than from Covid - which most of us are likely to be exposed to sooner or later.And also proved from the millions of jabs given.

I have had 2 jabs and have tested positive for antibodies - nad also sent bloods for a Biobank study - which show that they do not come from having had the disease !

[JP1952]

I've had both doses of Pfizer with no side effects and subsequently tested positive for antibodies.

[Amethist]

Sorry to hear you know of people who have possibly reacted badly. I do hope they reported these things to the authorities for further investigation? Maybe also worth looking up how our governments compensate those who are injured or who have died from this particular medical intervention.

I have sent you a PM with the other info.

🙏🏻

[Lifam]

I have had both doses of Astrazeneca, no problem at all

[Pauline43]

I also had both Pfizer vaccinations (PV and hydroxycarbamide) and have tested positive for antibodies.

[Hidden]

Sorry to hear this Clarke7.

[ciye]

I have had both jabs and am fine, but as for their effectiveness that an other matter. My sister has covid despite being double jabbed thankfully it's mild symptoms .... Caution is needed

[Wyebird in reply to ciye]

Maybe her symptoms were mild because she had the jabs

[ciye in reply to Wyebird]

Hopefully, she is a stickler for space, masks etc...

[Otterfield in reply to ciye]

In people who have had both jabs any cases of Covid have been mild. Your sister has benefited from her vaccine! Great result! 🙂

[Ebot]

Actually it’s slightly more nuanced than ‘your body, your choice’. Being vaccinated is not about ‘Me. Me. Me.’ It’s about protecting the communities in which we live and work. It’s about striving to reduce the risk of transmission of disease that will make otherwise healthy people sick, kill the most vulnerable among our families, colleagues and neighbours, overwhelm our health systems and decimate our economies.

Since, like many others living with an MPN, I’m one of the ‘vulnerable’ I’m being cautious around everyone especially as restrictions lift - and cases climb. I’m most definitely steering clear of anyone who is not vaccinated. It’s a great privilege to be able to refuse a vaccine and risk your own life. I’m not so enthralled with other people choosing to risk mine.

[Otterfield in reply to Ebot]

You have hit the nail on the head Ebot. As various restrictions are lifted I'm becoming genuinely nervous of people who are refusing the vaccine. Sadly that includes one of my own relatives (although he has not completely ruled it out). This makes me very sad as I will need to explain to him that I can only see him outside, at a distance.

[Wyebird in reply to Otterfield]

What annoys me even more is the reluctance to wear masks. I’ve moaned to my gym supervisor, train guards, shop keepers and to my MP. Just think what it’s going to be like on Monday- I’m going to continue to wear a mask in enclosed public places

[Otterfield in reply to Wyebird]

Yes! Masks too! I find them uncomfortable but if I can wear them so can others. A few businesses in my small town have posted on Facebook that they are keeping restrictions in place so those are the ones I will support.

[Wyebird in reply to Ebot]

Fab post

[Amethist in reply to Ebot]

Just sharing the link from the GP site Pulse. Please also see comments from GPS at the end . Makes an interesting read.

GPs and data indicate continued rise in double-vaccinated Covid cases - pulsetoday.co.uk/news/clini...

[Ebot in reply to Amethist]

Yes, the article in Pulse (professional U.K. magazine for medics , particularly GPs) backs up the points I made earlier. And provides further explanation about the relative rises / drops in Covid positive cases among vaccinated / non vaccinated individuals.

‘This is probably because we’re running out of unvaccinated susceptible people to infect as more and more people get the vaccine.

‘Whilst the figures look worrying, it’s important to highlight that vaccines have massively reduced severe infections and post-vaccination Covid is a much milder disease for most people. The main concern is now the risk of long Covid.’

That’s exactly right. As an increasing majority of the population receive both vaccines, it is increasingly likely that the number of people testing positive who are already double vaccinated will go up. And the number of people testing positive who are unvaccinated (or have only had one dose) will go down. The big difference is that the diminishing number of unvaccinated people are at much greater risk of severe illness and hospitalisation than the increasing majority of people who are double vaccinated.

Thank you for sharing.

[mhos61 in reply to Ebot]

Thanks Ebot for your evaluation of this article, clear interpretation is so valuable. Makes perfect sense to me.

Thanks Amethyst for posting, indeed an interesting read.

[Dan73]

I also had 2 doses of Moderna and tested positive for antibodies. In the US at least 300,000,000 doses have been given with rare cases of serious side effects. On the other hand, there have been over 600,000 known Covid deaths. In addition, a large number of Covid survivors have long term issues. The odds seem to heavily favor getting vaccinated .

[ciye in reply to Dan73]

I disagree it is personal choice, you can't force someone to have a vaccine against their will.

[Dan73 in reply to ciye]

I don’t think I mentioned forcing people to get vaccinated. I don’t think that would be a good idea but I think it’s OK for businesses, hospitals, schools etc. to require vaccination for employment or entry to the premises. I don’t believe in forcing people to get vaccinated but I don’t think unvaccinated people have the right to spread a deadly disease to others.

[ciye in reply to Dan73]

There is little to choose between force and prohibative coersion.

[Ebot in reply to ciye]

You’re absolutely right you can’t force anyone to do anything. But you can (and we do) enforce consequences if people don’t follow laws / regulations / guidelines / advice from speeding on roads to running in school corridors, carry on baggage limits to smoking in public places. Protecting societies from Covid transmission and the health, social and economic effects of the virus is just another example of action and consequences.

[ciye in reply to Ebot]

None of those involve but something in to your body you simply don't believe in.

[Runner999 in reply to ciye]

Try using facts rather than beliefs.

The vaccine protects you from potentially far worse outcomes.

[ciye in reply to Runner999]

I agree that why I had mine, my choice for me. I respect the right of those who choose not to.

[SRH55]

I’ve had both my Pfizer jabs with no side effects apart from an aching arm. I thought it was the right decision at the time as I believe covid could probably be worse, still think it was the right decision. I am ET, mpl positive on Pegasys.

[ciye in reply to SRH55]

I decided after lung surgery to have the jab as any respiratory illness wouldn't be too good. I am also ET with mpl I am on my 3 injection of Pegasus after 15 months of Hu hopefully this will be better long term.

[Mazcd Partner MPNVoice]

Having a MPN is not a contraindication for having a COVID vaccination we have information on our website which will help mpnvoice.org.uk/news/covid-...

[Borage]

I had both doses of AstraZeneca with just a sore muscle after the first injection. I did ask the nurse to pull back on the plunger to make sure it was given I.M. and not into a blood vessel.I have given blood for antibody levels research. I hope that I will get my results, the blood form had my details and was signed by my consultant but there is nothing on the computer!

[mhos61]

I have ET and have had both doses of the AZ vaccine. I suffered no side effects other than a bit of fatigue which equally could be attributed to ET, or a combination of both.

I also took the antibody test (specific to the vaccine) and was delighted to have a positive result

[Gipsy123]

Yes : do take itwhen offered I have had both Pfizer jabs. By chance I was in a random sample of the population who were tested for antibodies, and I had them. So the vaccine had worked. Its not perfect, but the benefits are far more than the risks.

[Adlon57]

Unfortunately there always has to be one to put a spanner in the works, I have Schwannomatosis, and the day after I received my second jab of AZ, two pin pricks opened up on my left arm, and a schwannoma very near it, since then this schwannoma has badly affected the use of my left hand, BUT I am the exception, and since I am the only person in Ireland with this condition, IF I needed a third jab I would be first in the queue for such! and as you say Gipsy123 "Its not perfect, but the benefits are far more than the risks."

[Jellybean129]

Fabulous thread and some very passionate replies. I am ET Jak 2+ and on hydroxycarbamide. I have had both jabs (Pfizer) - the first no reaction and the second floored me for 36 hours (slept 32 of them!!). My feeling is that the benefits of the jab outweigh any risk. How many of us are on medication which may list countless side effects, yet we still take it. If agreeing to have two injections helps to reduce the awful fall-out from Covid and provides higher protection to those around us, surely that outweighs the small risk of getting complications. I feel very good that I am now double jabbed but even better knowing that when I visit my mother in her care home I know I have done everything I can to protect her and all the other residents.

[junebuggy]

This study suggests vaccine is safe and recommended for blood cancer patients, and 97% (34 of 35) of myelodysplastic syndrome &MPN patients developed some antibodies in response to the vaccine lls.org/news/study-leukemia... lls.org/sites/default/files...

antibody response to covid vaccine in blood cancer patients