MPN ET and Covid Vaccines

[SilverET]

Hi All,

I hope everyone is travelling OK. And a big congratulations to Steve for his ride to Coffs. I do not know how you can spend that much time in the saddle and still walk. Crazy and amazing.

Has anyone received their Covid vaccine yet and if so did you have Pfizer or Astra Zeneca? My GP has recommended that with my ET and previous clotting events I may be better with the Pfizer vaccine but as I am just over 50 this is proving hard to get hold of. I was wondering how others went if they had the Astra Zeneca vaccine and whether there were any issues with clotting afterwards. I am on medication but know that I am borderline needing something stronger so am loathe to push the envelope with anything that puts me at higher risk of another clot abut also want to get vaccinated as soon as I can. While we are lucky here in Australia at the moment this could all change rapidly at any time. Thoughts anyone?

Cheers,
SilverET

[MPN-MATE Admin]

Hey & morning Silver ET...

Yes, like you, I too am quite concerned about the benefit v. risk analysis & its seemingly '"utilitarian building" approach, as to me every life is vitally important, and therefore NONE should be put at risk, ideally of course...

My history of having had TIAs, & of having an 'acquired' Von Willebrands Sysndrome (VWS) issue is evidence enough for myself that I need to be most circumspect where 'Vaccines' and their choices are concerned, in my view...

the beauty of being here in Australia, simply means that we do not currently have the same type of emergency that is happening elsewhere on the planet, and as such I am opting more for the "Wait & Watch' approach, for the time being...

Naturally, I remain curious as to how others react to the vaccine, (& particularly which vaccine?). However, I am not in any hurry to be vaccinated at this juncture, and if I have to choose between one or the other, then for myself I would be asking for the Pfizer or Moderna, and will not be taking either the AZ or JJ vaccines, in my own case...

There is also another Post here that I made sometime ago from Professor Nikolai Petrovsky of Flinders University in SA, that you might also care to have a good listen to. He makes many valid and interesting points concerning the failings of the currently approved types of vaccines, and offers another as a better option...

The POST is entitled: "THE GRAND ROUND..."
viewtopic.php?f=3&t=393

Please do keep me Posted as to whatever you find Natasha... Obviously, and as you are located in South Australia, you might already know of the Professor(?)

Best wishes

Steve

[Alkemist]

Initially both my GP and haematologist recommended I be vaccinated at the earliest opportunity and so I booked an appointment. After the first few cases of blood clots with the AZ vaccine, and the mechanism of clot formation, were reported I had second thoughts. I told both doctors that I thought there was a lack of information as to whether MPN patients, and others with platelet abnormalities, are at higher risk with the AV vaccine and they agreed I should wait and see if more data are published. I'm hoping that an alternative vaccine will eventually will become available for my age group.
Allan

[SilverET]

Hi Guys,

Sorry about the delay in reply but I have been investigating possibilities for us in the vaccine world. I have just managed to get myself the Pfizer vaccine (even though I am over 50) due to ET and my increased risk and history of clotting.
So after much phoning around to National Covid Hotline, Health Direct and SA Health the consensus was that there was no way to use the online system to book myself in for Pfizer even when selecting blood cancer as a medical condition. This would allow me to book earlier in the phased scheme but not swap vaccines. So all the people I spoke to (and I must say they were all wonderfully helpful and lovely people) said to book a spot and lie about my age online and then correct it when I got there and to have a letter from my GP outlining my cancer and risk and to request consideration to get Pfizer vaccine as they wanted as many people to get safely vaccinated as possible ( especially those who may be at a greater risk from Covid 19).
I did this and although initially confused the reception staff had no problem correcting my birth date and giving me Pfizer. In fact they said I could have just booked in Astra Zeneca, brought my letter and then they would change me to Pfizer on the spot. They were surprised the online selector had not switched me to Pfizer anyway.
Had my first dose this morning and so far all ok. So if you are looking to get Pfizer and not Astra Zeneca due to a legit clotting cancer then hit up your GP and make a booking. It’s possible people. I’ll keep you up to date with how I go.
Good luck,
SilverET

[Merry]

I went to have my AstraZeneca jab yesterday. The doctor called my haematology department and they said no, I shouldn’t have it due to having a previous cerebral venous sinus thrombosis (CVST). I now need to speak to the haematologist to see if I can get the Pfizer jab. Merry

[Kinsale]

Hi SilverET

I’ve ET and Jak2+ And don’t have a history of blood clots. Both my haematologist and my GP were comfortable with me having the AstraZeneca and I’ve had my first shot on the 12th April and will have my second on the 28th June. I’ve had a small reaction but have sailed through to be honest. I’m a strong advocate of getting vaccinated ASAP as I feel I’m more at risk from COVID than from any vaccine.
Cheers
Mark

[SilverET]

Hi Mark and Merry,
I am also an advocate for getting vaccinated if possible. I have had two previous clotting events so was not keen on AZ but have managed to get Pfizer first dose. So far so good. They seem pretty good at listening to people with real reasons to swap vaccines which is good so hopefully with your letter, Merry they will give you Pfizer too. They accepted my GP letter and did not need anything from my specialist which made things quicker and easier. I also have Jak 2 positive ET. Good luck getting what is right for your circumstances.
Cheers,
Natasha

[Merry]

Hi All
I have a telephone appt with my haem in a months time to discuss and I will ask for a letter so I can hopefully get the Pfizer jab. My GP wants me to talk to him first as it is the haematology dept who said I am contraindicated for the AZ vaccine. I would like to be able to get the Pfizer ASAP as whilst it is great that we have no community transmission at the moment, if or when that does happen I would like to be vaccinated already. Cheers, Merry

[SilverET]

Hi Merry,
Good plan. Yes while we are doing well in Aust so far things could change rapidly so I was very keen to get vaccinated as soon as possible but like you I wanted to avoid anything that was linked with an increased risk of clotting. Good luck with your Heamatologist spot.
Cheers,
SilverET

[Misty-3]

Hello all
I am also ET Jak2+ and is very hesitant to get vaccinated with AZ as I’m over 50 though my Haems (I am seeing two at the moment) said that it is fine. There is a very small risk compared to the greater risk of COVID...
Was so surprised today to receive an email advising me that I am eligible to get the Pfizer vaccine at the Westmead Hospital COVID 19 Vaccination hub so I will go for it then...

Not sure whether my Haem in Westmead hospital requested for it as I did mention it to him two weeks ago that I prefer Pfizer...he did say that AZ is the only one available for more than 50s...

[SilverET]

Hi Misty,

Although AZ is the only vaccine listed for over 50's if you have a good reason to switch to Pfizer and support of your GP with a letter then they are willing to listen to reason and will permit Pfizer for those at higher risk of clotting. I have tested this and managed to get Pfizer even though I am over 50 too. I was much more comfortable receiving that vaccine. So don't let being over 50 deter you from trying to get vaccinated with Pfizer.
Covid-19 infection can also cause clotting so it is better to be vaccinated if possible (in my opinion). Good luck.

Cheers,
SilverET

[MPN-MATE Admin]

Hello all
I am also ET Jak2+ and is very hesitant to get vaccinated with AZ as I’m over 50 though my Haems (I am seeing two at the moment) said that it is fine. There is a very small risk compared to the greater risk of COVID...
Was so surprised today to receive an email advising me that I am eligible to get the Pfizer vaccine at the Westmead Hospital COVID 19 Vaccination hub so I will go for it then...

Not sure whether my Haem in Westmead hospital requested for it as I did mention it to him two weeks ago that I prefer Pfizer...he did say that AZ is the only one available for more than 50s...

Hey Misty...

Just letting you know, in case you have not seen Silver ET's reply to your last Post...

Click on the small number (2) & you'll find her Post, where she explains how her GP allowed her to receive the Pfizer vaccine, even though she is over 50 etc...

Best wishes

Steve

[MPN-MATE Admin]

Hello all
I am also ET Jak2+ and is very hesitant to get vaccinated with AZ as I’m over 50 though my Haems (I am seeing two at the moment) said that it is fine. There is a very small risk compared to the greater risk of COVID...
Was so surprised today to receive an email advising me that I am eligible to get the Pfizer vaccine at the Westmead Hospital COVID 19 Vaccination hub so I will go for it then...

Not sure whether my Haem in Westmead hospital requested for it as I did mention it to him two weeks ago that I prefer Pfizer...he did say that AZ is the only one available for more than 50s...

Hey Misty...

This is a further Update to the last I provided for you to see Silver ET's comments above...

Incidentally, I have just returned from my Specialist app't, and to my surprise, my doctor offered me the Pfizer vaccine if I wanted it because I am at a higher risk than most where AZ is concerned.

Hence, it appears that there does seem to be movement just to want to se all Australians vaccinated, irrespective of the type of vaccine...

I have suggested to her that there may still be a better vaccine out there, which I reiterated that the information about it is available
via our MATES Forum.

There's a POST called "GRAND ROUND" where a video is shown of a Nikolai Petrovsky from Flinder's University in SA.

Here's that Link:
viewtopic.php?f=3&t=393

I intend to contact the Professor again by email to ask him if & when his vaccine might become available, (if at all?)

If that is NOT likely to happen, I am intending on waiting for the Moderna version, as my last best option...

Hope this helps a tad...

Best wishes

Steve

[SilverET]

Hi All,

Just a quick update. I have had both my Pfizer jabs with a good body reaction- flat, tired, sl diarrhea for about a day (so should translate into a good immune response). I am not on any methotrexate or any other cytoreductive meds so I expected a good immune response. Had the last jab about a month ago with no adverse events. Haem is very comfortable for people like us to have Pfizer but is not at all comfortable with AZ for people with an already increased risk of clotting. Hope everyone else is finding a way to get the jab of their choice and get protected. The risk of clots with Covid 19 disease is quite prevalent so worth getting protected if you can.

Cheers,
SilverET

[MPN-MATE Admin]

Hey there Silver ET...

Nice informative Post too... Very interesting results, but have you been as yet tested to see if your system has indeed started creating anti-bodies?

I note that there are quite a few MPNers out there, who have, a similar 'Driver' mutation (CALR+), w/ ET, who claim that they are yet to produce any anti-bodies at all, after having received both Pfizer jabs...

I am also in possession of some articles that suggest that MPNers / patients being treated w/ immunosuppression & Methotrexate, will most likely not produce any anti-bodies at all... And seeing as how NONE of the current crop of vaccines actually KILL the CV-19 virus, there appears very little logic for someone like me, who is made highly vulnerable to infection, to risk taking any of those jabs at all...

There is a greater risk awaiting me also if I were to stop having my immune system suppressed by ceasing the Ruxolitinib, because doing so according to other Papers I have now scanned, could likely prove most unwise... (?)

I am also completely w/ you on the AZ too... & especially so because I continue to suffer from clotting (acquired VWS), & a very high Platelet regime, & my recent MRI now clearly indicates a number of older TIAs & one or two major lacunar infarcts (Strokes) to my right cerebellum...

However, I am not saying that I am against vaccinations in a general sense. Of course I've had many as a child, & I am sure that they were most beneficial. Nevertheless, in my MPN condition, and w/ the only vaccines currently available, I cannot see any benefit at all in my own case, specifically.

That does not mean to say that it in anyway should automatically follow that these vaccines are not beneficial to normal healthy people... Whether they are or not, remains to be seen in the fullness of time, data collection, scientific peer-reviews, and that might take up to 5- 10 years before anyone really knows anything, in my humble non-medically qualified view, of course...

Thanks for Posting Silver ET...

Steve

[Misty-3]

Hey Steve and SilverET and all

Had my 2 doses of Pfizer vaccine…no serious side effects…just sore arm and a little tired for a couple of days…

I was scheduled to go back to the office 2nd week of July hence I had the vaccine completed during the first week. My Haems strongly suggested that I get the vaccine before I go back to the office…their point is we are at a very high risk for COVID compared to the side effects of the vaccine…

Anyway, came this lockdown…so didn’t get to go back to the office and still working from home…

Hope everyone who had their vac is doing well!!! Take care all!

Misty