It’s flu season and many of us with mast cell disease are faced with a difficult decision. Do we risk getting the flu or do we risk getting a flu shot? It’s a very real conundrum, with no easy answer, as I’ve learned.
Either one may lead to a severe reaction thanks to our faulty immune system and there is no real way to estimate which may be worse. Even if we’ve had the flu shot before it doesn’t mean we won’t react to it the next time. It doesn’t mean we will, either. Just because we’ve had the flu and gotten over it just fine in the past doesn’t mean it won’t be far worse next time.
The fact that there are some pretty scary and potentially mast cell triggering ingredients in vaccines like aluminum, formaldehyde, citric acid, mercury, and more, might deter quite a few of us. Others may argue that the amounts in the vaccines are minuscule and the risks negligible compared to the benefit from the vaccine itself.
Still, we need to see what the mast cell disease experts are saying and then listen to what other patients themselves are saying in order to make a more informed decision.
What do the mast cell experts say about getting vaccines?
There have been no real studies done on vaccines and MCAD patients. There is this advice though from Dr. Molderings:
When MCAD is suspected, therapies that strongly activate the immune system (e.g., vaccinations with live vaccines or autohemotherapy) must be given with caution (especially if similar therapies were previously already poorly tolerated), as such interventions sometimes dramatically worsen MCAD acutely and/or chronically.
From Dr. Afrin’s book, Never Bet Against Occam, he recommends getting vaccinated as part of the preventative measures we should be taking:
Vaccinations (for those who aren’t triggered by them)
How do we know if we are triggered by them, though? What if we were diagnosed after having a reaction, should we still take the flu shot? Are there precautions we can take just in case?
This applies not only to the flu shot but to vaccines in general. From an article addressing vaccinations in children with mastocytosis from The Mastocytosis Society, here’s what they have to say on the topic:
Single vaccines given with consideration for premedication, in a controlled environment with monitoring, is the combined cautious approach recommended.
This seems reasonable, and our doctors should carefully monitor us and be well aware of a potential reaction that can happen immediately or even days afterwards if we opt to get the jab. We, too, should be prepared for a reaction once we are away from the doctor and should be ready with rescue medicines like Benedryl and epipens and even a medic alert bracelet and a fully charged cell phone just in case we need to get to the ER.
The thought is pretty terrifying but then again, so is the flu. While MCAD is not autoimmune, there are similarities between the effect of influenza on our compromised immune system as well as patients reporting being triggered by the vaccine itself:
Influenza infection can cause mild to severe illness and can even lead to death. The best way to prevent infection is vaccination against influenza. Complications of influenza infection are not only a consequence of acute infection but can also present as late autoimmune response. Influenza is not frequently implicated as a trigger for autoimmune diseases, but case reports of autoimmune adverse events have been published even following influenza vaccination.
What are MCAD patients saying about their experience with vaccines like the flu shot?
I searched across the web and found various forums where MCAS and mastocytosis patients gave their personal views and experiences.
They ranged from this:
“I’ve run into a dozen people who were fine until receiving the flu shot.”
“I was advised against the flu Jab by the Masto Team St Thomas Hospital London.”
“I have Masto and get the flu shot annually, recommended by Dr. Castell’s at BWH. No reaction and no flu for the last 5-6 years.“
“I had my first attack a month after my first H1N1 vaccine.”
“I requested the preservative-free prep. I am more cautious now since I shocked out from the Pnemovax.“
And also this:
“I was at a conference several years ago with Dr. Castells and Dr. Akin among other masto specialists. They were adamant that we mast cell disorder people should get a flu shot and a pneumonia shot because those 2 illnesses could be far more dangerous to us than the side effects.”
The same person also said this:
“For me, personally, that is good news as I have never reacted to it except for this year. So I will continue to get them each year.”
I did an informal poll in a mast cell activation group I belong to and a lot of us opt to not get the flu jab because we’ve reacted before. Some of us get them and have no reactions, and some have a reaction but feel it is worth the benefit. Most of us are afraid of the worst. We choose not to put what’s in them into our already fragile immune systems and risk getting the flu in case it is the lesser of two evils.
Are our fears unfounded?
Perhaps, but one thing is for sure, there is much needed research in this area. The Mastocytosis Society puts it very well when they say:
This article is an important starting point for discussion between patients and their healthcare providers when facing decisions regarding vaccination.These recommendations raise many important questions that warrant further investigation including:
Are patients and their physicians aware of this current information?
Are single vaccines readily available to this vulnerable population?
What are the implications for patients with other mast cell disorders including mast cell activation syndrome (MCAS) and idiopathic anaphylaxis (IA), as well as patients who are being investigated for mastocytosis at the time that vaccines are due?
The recommendations therefore indicate an urgent need for more research on vaccination in patients with mast cell disorders.
Good luck in whatever decision you make for your health. I know which decision I’m making for mine.