I wonder if there is any official input regarding the safety of the covid vaccines about to be released for patients wiith MPN's
I know we can have the flu vaccine, but I have no idea re the components of the Covid vaccine and whether it will be an issue for those of us diagnosed with an MPN? Any thoughts??
I would hold fire on this question for the moment. There is multiple vaccines that look promising & all have different mechanisms. The safety testing is still underway & has yet to be reviewed therefore no official word can be given to patients or the public until testing is completed & the data is analysed & reviewed . The government are advising that we don't look at it as the holy grail that's available ASAP but to look at it as a promising sign. The pharmaceutical companies are releasing information drip form to increase their shares to increase funding so they can be first across the line, as well as governments are securing options on their vaccine so are injecting cash through paying deposits or promises of purchases which the pharmas can offset against investment.
It's just a bit early to look at what might be available as they might not yet even get past testing to go into production. So no medical person will give the answer at the moment unfortunately.
However, they usually do find a way for it to be available to all.
Hi Jeanr, I have asked Prof Harrison and she has advised that: Need to weigh up risks of disease vs vaccine.
These trials have moved very fast and we are still awaiting final data.
Thank you Maz for getting Prof Harrison's advice on this for us. We are all awaiting advice from Haematologist experts like her before making decisions on the vaccines and are so pleased to have this group and you to turn to for advice. Best wishes, Fran
Can you explain more what she means by risks vs. disease? What are the risks she sees? Honestly asking. I know my Stanford rheumie is saying no until more testing is done on AI about dosing.
Hello HanaleiBa, it is the risk of catching COVID to the individual patient vs risk of vaccine.
There is a calculator tool that you can use to look at the risk of COVID. It is from a paper recently published in the BMJ bmj.com/content/371/bmj.m3731
and the tool itself is available here qcovid.org/
I hope this helps. Best wishes, Maz
We will eventually know the answer, but not until there are sufficient clinical trials to generate the data. Until then, all answers are theoretical. Theoretically, unless someone is on a medication that alters immune response or has a condition that includes altered immune response, then there would be no difference in how the vaccine would impact the person who took it. Theoretically. That is why it is important for people with MPNs to volunteer for clinical trials should they be available. Otherwise, we will find out with the first cohort of people with MPNs who take the vaccines when they become available. Someone has to go first. That is why I volunteered for clinical trials at Johns Hopkins should they want a MPN cohort in their study. I hope they will offer the opportunity. Otherwise, I will take the vaccine when it becomes available. Some risks are worth taking.
I am weary of all the COVID constraints and feel the need to move on. Hopefully we will all be able tp do so sooner rather than later.
Hi Hunter, well done for volunteering, and thank you. Best wishes, Maz
I hope they take me up on the offer, but the MPN cadre is pretty small in any study like this so they may simply choose not to investigate the impact on people with MPNs. We will see what happens. All the best until we know more.
I'm wondering the same thing Jean and will keep my eyes peeled for more info on this. Warm regardsAdieshanti
I asked my haemo this Wednesday just gone during my telephone consultation; he was of the opinion that as the initial vaccines due to be available first are not 'live' they should - he stressed 'should' - be no different than having a 'flu jab.
However, he also said no guidelines had yet been issued to them by any health body but if and when they are, it would be prudent for me i.e. any patient with an MPN to contact their Haematology Clinical Nurse Specialist (or haematologist if you can get through directly to one) to see if such guidelines had by that time been issued and follow their advice.
I must admit l am also weary of living this way. I am not sure that we will get to choose which vaccine we can opt for. It will depend on availability and clinical decisions
I personally wouldn’t go for the AstraZeneca as first choice just yet the data seem confusing they are now rerunning a phase
feel at my best when haematocrit is between 39 and 42
Myelofibrosis
Myelofibrosis- GVHD graft, versus, host, disease. 
decreasing white blood cell count
