Covid19 vaccine

[Stone17]

Hi all, I have mastocytosis and joined today looking for info on which vaccine would best suit people with this condition. Was diagnosed in 2013 after my spleen was removed as no one could find a cause for enlargement. This means I have two possible problems if I get covid so vaccine is important. Thanks

[specksmum]

I have mastocytosis and was actually refused the Pfizer vaccine at the last minute after being called into the hospital to have it! I was told the Oxford version may possibly be okay for me. Fingers crossed!

[Stone17 in reply to specksmum]

Thanks, that was my thought, so will wait and see. May not be called for a while anyway.

[JW50 in reply to specksmum]

Hi, I'm diagnosed MCAS and had the Pfizer vaccine last week. Initially I had no reaction but yesterday my thermostat went awry and I've been very hot since. Luckily my colleagues are kind and put up with me flinging the office windows open and running my wrists under the cold tap. I don't know if this is linked to the vaccine or whether something else has upset my system. I'm also without Nalcrom at the moment so that's not helping either.

[Stone17 in reply to JW50]

Thanks for posting this. Hope you are feeling better by now.

[Jess-UKMasto Partner]

Hi Stone,

This is certainly a question on everyone's mind! I know of several people with mastocytosis who were refused the Pfizer vaccine so far because of concerns about anaphylaxis. (None have had it as far as I know, so we don't actually know if they would have anaphylaxis, but people are being cautious about who it's offered to.) The current guidelines say that if you have had an allergic reaction to any of the components of the vaccine you should not receive it, but we are exceptional, I suppose. We are having ongoing discussions with our medical advisors but there is so little data to go on that there is no definitive response yet. I know of someone with a diagnosis of mast cell activation syndrome who has successfully had the Pfizer shot and may have had a minor reaction but was fine shortly after. I also know of someone with hereditary alphatryptasemia who has had it without a reaction.

What we still don't know is what element of the vaccine is causing the anaphylaxis. (Could of course be more than one thing). The suspect at the top of the list is the PEG (polyethylene glycol) which is being used to stabilise the little ball of lipids (fats) that are surrounding the mRNA. PEG is used in some other medications (some preps for colonoscopies for example) and in some other injectables and there are known cases of anaphylaxis to PEG. It's possible that it's not the PEG and it's the lipids or the mRNA itself. Unclear. The National Institutes of Health in the US is having its institute for allergy and infectious diseases try to figure it out. (That's also where the mastocytosis researchers are housed, so I'm hoping they're also thinking of us.)

The Oxford vaccine takes a different approach. No mRNA, but the carrier is an adenovirus (a cold virus that's common in chimps but doesn't cause symptoms in humans). It does have a relative of PEG (polysorbate 80) which is an emulsifier that's common in foods among other things at much higher doses, so hoping it's a non issue! (It's apparently in some other vaccines as well: vk.ovg.ox.ac.uk/vk/vaccine-... and I've seen a list that suggests it's in quite a number of vaccines, including DtAP which most adults have. My guess is that most of us will be waiting until there are a good number of people who have had it before we get it anyway, or if we're near the top of the list as specksmum is, that we will be asked to wait for a bit more experience to be had.

TMS in the US (tmsforacure.org) has a statement out and their medical advisors recommend premedication if you are offered the vaccine and you and your doctor decide to proceed.

I hope that's helpful, even though it isn't definitive!

Very best,

Jess

[Stone17 in reply to Jess-UKMasto]

Thanks Jess, glad to know things are being investigated. Don't want to risk a severe reaction but definitely want jab. If only we knew what would happen!Take care everyone and I will await further news.

[Jess-UKMasto Partner in reply to Stone17]

I'm with you. I am definitely keen to have a jab when it's my turn and would be happier if there were some data available at that time!

[middevongal in reply to Jess-UKMasto]

Me too! I’ve been offered the vaccine through work this Monday coming. Have emailed consultant and am also trying to find out which vaccine it is. My feeling right now is that I’ll hang on at least until my consultant has replied.Good to hear that the few that have received it are ok,

[Stone17 in reply to middevongal]

Good luck. Let us know how it goes.

[specksmum]

I have mastocytosis and at 83 I have had the first jab of the Oxford vaccine with no problems. My consultant said the Pfizer was not suitable.

[Stone17 in reply to specksmum]

Thanks for that. I have to wait till February for my vaccine. Lets hope things start to improve soon.

[Jess-UKMasto Partner]

Good to hear that went well, Specksmum!

[Jess-UKMasto Partner]

We are close to getting an agreed statement from our medical folks. Even with that, you will need to assess whether you think you're at a higher risk of reaction and make your own decision. It will definitely recommend considering taking 10mg of cetirizine before having the jab. I expect it to advise additional caution for people whose mast cell disease is not well controlled, who should consult about having higher level medical support available, further premedication etc. and that everyone have epipens with them and be observed for a longer period. There are definitely patients now with mastocytosis who have had the Pfizer vaccine without a problem. I know of a few who had minor reactions to it. I know of one person with MCAS who had anaphylaxis to it.

[Stone17]

We are all different so we have to make the best decisions we can. Just renewed my epipens today, never had to use them in eight years, but not taking chances. Will consider the cetirizene, think you can get it over the counter. Good luck all.