Jak question in regard to covid vaccine - MPN Voice

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Jak question in regard to covid vaccine

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52 Replies

A couple of months ago, I was diagnosed with Jak 2 V6175 as an interpretation from extensive blood work. My treatment is aspirin. I am concerned with navigating covid, and my holistic doctor doesn't think I should take the vaccine. Wondering if others with this condition have taken the vaccine and how they are doing. Thank you.

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52 Replies
paradiastole profile image
paradiastole

There is no reason why people with MPNs should not be vaccinated, in fact it is strongly recommended that we should be vaccinated. You need to think about why your “holistic doctor” is telling you something that is clearly not in your best interest.

tree_top profile image
tree_top in reply toparadiastole

I agree, but just curious if anyone has taken it. I appreciate your response.

Jennytheb profile image
Jennytheb in reply toparadiastole

I have been vaccinated and in fact my red platelet numbers haven't been so low, down 100 from previous lower numbers. Agree with hunter on this and although did think twice about the 3rd vaccine, will go ahead. The only concern I have about this is they are thinking about combining the flu vaccine with the 3rd. I am no bio chemist but why mess like this? Just flu vaccine and then Covid vaccine I am going to try for.

Jennytheb profile image
Jennytheb in reply toJennytheb

By the way I am JAK 2 too.

hunter5582 profile image
hunter5582

I just had my COVID vaccine booster (3rd jab). I have had no adverse effects. Given that mu immune system is somewhat depressed from the Pegasys, I am glad to have access to the vaccine. I think the benefits clearly outweigh the risks.

tree_top profile image
tree_top in reply tohunter5582

Thank you!

hunter5582 profile image
hunter5582 in reply totree_top

Just as an update, my arm got a bit sore after a while and around bedtime started feeling mild-flu-like symptoms. Feeling a bit droopy today. Expect I will be back to normal by tomorrow. Meanwhile, doing some work at my computer and not planning to train for the iron-man triathlon today.

On the whole, still worth it to get the COVID immunity boost.

tree_top profile image
tree_top in reply tohunter5582

Thank you. I appreciate your response.

SuET2017 profile image
SuET2017

Yes, (ET triple neg, take peg interferon 45 weekly) I’ve had both vaccine and am fine.

tree_top profile image
tree_top in reply toSuET2017

Thank you!

Deefen profile image
Deefen

I’m the same as you, JAK2, just on aspirin. I had the Pfizer vaccine with zero issues. Personally, I feel we are at greater risk of experiencing more serious Covid symptoms than someone who does not have an MPN, so it’s vital to get the vaccine. My integrative medical doc agreed totally.

tree_top profile image
tree_top in reply toDeefen

Thank you!!

Andyf24 profile image
Andyf24

Hi..so I am Pv and on aspirin and venesection, have had 2 jabs of the Astra Zenecca vaccine ....no major issues other than strong flu symptoms with first dose... I would 100 percent be getting vaccinated asap especially with winter likely to be tough this year

tree_top profile image
tree_top in reply toAndyf24

Thank you!

Ebot profile image
Ebot

I have PV and had both my jabs as soon as I could. Apart from the standard sore arm and feeling a bit ‘off’ after the second, I was perfectly fine. Now awaiting my booster.

The advice from the world’s leading MPN experts is to take the jab but to remain cautious as no one is yet sure how effective they are in MPN patients.

Like others I’m concerned that your ‘holistic’ practitioner has suggested you don’t have the vaccine. This is certainly contrary to the advice of the MPN experts. It’s really important you are under the care of a haematologist who specialises in MPNs. They are rare diseases and expert (up to date) knowledge and management is vital. Wishing you well.

tree_top profile image
tree_top in reply toEbot

Thank you!

JP1952 profile image
JP1952

I have PV, take daily asprin and 15 hydrea tablets per week. Had both Pfizer jabs with no ill effects and I later showed positive for antibodies for the covid virus.

tree_top profile image
tree_top in reply toJP1952

Thank you!

KC63 profile image
KC63

Hi I have pv and had both jabs. I'm currently day 8 of covid and been quite unwell. I dread to think what it would have been like without them. Best wishes

tree_top profile image
tree_top in reply toKC63

Healing vibes coming your way. Thank you!

KC63 profile image
KC63 in reply totree_top

Aww thank you ! Hope it helps with your decision x

tree_top profile image
tree_top in reply toKC63

yes, I am taking all responses very seriously. thank you!

ChillyAsh34 profile image
ChillyAsh34

I have same as you I am on aspirin and hydroxycarbamide I have been double jabbed no problems I had astra zeneca I am just 70

tree_top profile image
tree_top in reply toChillyAsh34

Thank you!

JediReject profile image
JediReject

Hi tree_top , , as others have said it's recommended that peops with blood cancers should take up the vaccine and follow up booster jabs. I think it's good to adopt a holistic approach but in conjunction with a scientific one where potentially serious conditions or consequences of not doing something like being vaccinated are in play.

Will your holistic doc advise against the flu jab which again is recommended or indeed taking a chemotherapy drug if and when you need to. I guess it depends on how strongly you feel about how much you can rely solely on your holistic care going forward but you obviously have some doubts about this vaccination advisory.

I hope you choose to be vaccinated but ultimately it's your choice and I wish you luck going forward with your JAK / MPN diagnosis.

Regards - Chris

tree_top profile image
tree_top in reply toJediReject

Thank you

Andrew8 profile image
Andrew8

I've had MF now for 4 years, taking Lakavi ruxoliinib, had 2 jabs of Astra, with no side effects at all. Will take booster when it is offered and flu as well. Remain cautious about going to public places where there are visitors out of the district, and wear mask if I think there is any risk. Have a circle of friends who operate the same system, and if they have been out of the area, avoid contact fro a week. I was told that once I had had the jabs there is no reliable test for antibodies.

tree_top profile image
tree_top in reply toAndrew8

Thank you!

Cja1956 profile image
Cja1956

I’m post Et MF and take hydroxyurea and Fedratinib. My MPN specialist definitely recommended taking the vaccines. I had the Pfizer with no problems and will take the booster as soon as it’s available.

tree_top profile image
tree_top in reply toCja1956

Thank you!

Lena70 profile image
Lena70

I received the Pfizer vaccine with no ill effects.

I would say my health and well-being is better after the vaccine as a great deal of anxiety and worry has been lifted.

tree_top profile image
tree_top in reply toLena70

Thank you!

Lifam profile image
Lifam

I had my 2nd dose of Astrazeneca end of June, no problem at all. Just because of our conditions we're more valuable for having the virus, and we should have the vaccine.

tree_top profile image
tree_top in reply toLifam

Thank you!

Annula profile image
Annula

Yes I have had the Astra Zeneca vaccine - all good here..fingers crossed..

tree_top profile image
tree_top in reply toAnnula

Thank you!

Mostew profile image
Mostew

I have JAK 2 I v6175

I would be cautious about seeing a practitioner who is advising against ANY conventional treatment.

I have seen many over the years and they support me in decision making discussing my wishes and concerns .

Respecting how what I choose.

Like you I was reluctant to have vaccine but decided to have it . No problems with it so far…

I am choosing not to have booster though .

Weigh up pros and cons ..

x

tree_top profile image
tree_top in reply toMostew

I understand. I have several friends who are mainstream doctors who are the best in their lanes who have also said not to take it, so I am very conflicted. I have a prescription for Ivermectin that I was going to use along with my protocol of vitamins thinking it was a less toxic approach. Still conflicted.

Mostew profile image
Mostew in reply totree_top

So is it because of our diagnosis they advise ? Isn’t ivermectin tripled for use when you actually have COVID?

I’m interested to know what people you know have said and wonder if they consider it ok for the general population.

I even asked a homeopath of 40 years experience who is a qualified conventional Dr. He had it and said it was advisable .

I have never agreed to having vaccines before and my children didn’t have the usual ones so I fully understand your dilemma.

I’m not being talked into flu one , which I know my Gp. will be keen for me to

have ..

so hard to decide .

X

tree_top profile image
tree_top in reply toMostew

Ivermectin can be used as a preventative as well as a treatment. I have not taken it yet and was going to use it if I get the virus. I am going to do more research, but the responses here have been very helpful.

Mostew profile image
Mostew in reply totree_top

I’ll read up on that . Maybe a good back up plan .

As long as you have done all research and talked to people you trust go with your gut feeling . X

tree_top profile image
tree_top in reply toMostew

Thanks again!

Meatloaf9 profile image
Meatloaf9

Hi, I have PV Jak2+, I have had 3 doses of the pfizer vaccine, 3rd dose yesterday. A slightly sore arm after each one, nothing else. Covid is surging in my area and has increased by over 2100% in the last 3 weeks in our county. Good luck with your decision.

tree_top profile image
tree_top in reply toMeatloaf9

Thanks yes it is very active here too!

Hannah52 profile image
Hannah52

I have ET Jak 2+ and I have had my first and second vaccine with no problems

tree_top profile image
tree_top in reply toHannah52

Thank you- good news!

gvibes profile image
gvibes

I have PV Jak 2 (Exon 12) on pegasys treatment and have had two doses of pfizer vaccine without problems. I plan on getting the 3rd next week. My hematologist and MPN specialist have both promoted getting the vaccine. Good luck...

tree_top profile image
tree_top in reply togvibes

thank you!

Paul_1971 profile image
Paul_1971

Medical advice is to have the vaccine, I have and will have a booster. There is no actual evidence from what I read that ivermectin can treat or prevent covid.

Personally, just my opinion, any individual calling themselves a doctor who advises against protecting yourself In a global pandemic is negligent at best.

Otterfield profile image
Otterfield in reply toPaul_1971

sciencebasedmedicine.org/iv...

I agree.

And the above is quite an interesting if lengthy read. It pretty much confirms that there is no evidence that Ivermectin is effective against Covid.

On the website, we can also check the credentials of the contributors.

I don't want to start another debate, but I thought it was worth sharing.

tree_top profile image
tree_top in reply toOtterfield

Thank you

tree_top profile image
tree_top in reply toPaul_1971

Thanks- I like hearing all sides

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