Do Covid Vaccines trigger reactions in MCAS patients?

Have you had a Covid vaccine?

  • I have been diagnosed with MCAS and I reacted badly to the Covid vaccine

    Votes: 2 13.3%
  • I have been diagnosed with MCAS and I didn't react to the Covid vaccine

    Votes: 1 6.7%
  • I suspect I have MCAS and I reacted badly to the Covid vaccine

    Votes: 6 40.0%
  • I suspect I have MCAS and I didn't react to the Covid vaccine

    Votes: 2 13.3%
  • Other (please specify)

    Votes: 3 20.0%
  • I've been diagnosed with MCAS and had a normal reaction to the vaccine

    Votes: 1 6.7%
  • I suspect I have MCAS and had a normal reaction to the vaccine

    Votes: 0 0.0%

  • Total voters
    15

hb8847

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I've not had the vaccine so far as I'm worried how I'll react. And I'm completely isolated on account of my ME/CFS so I considered the risk of catching Covid much lower than having a bad reaction to the vaccine.

My MCAS doctor though wants me to go for a bunch of tests and has such now wants me to get the vaccine. I asked him about bad reactions but he considers the risk of catching Covid a far greater threat, he has some patients that are struggling really badly having caught it.

Have you had the vaccine, and did it trigger a strong reaction? If so, which vaccine did you have?
 
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I'm not sure if my experience will be generalizable to you, but I'll share in case it is. I got COVID in March 2020 - prior to that, I had no pre-existing conditions that I knew of, used to run half marathons, and was really physically fit. My COVID didn't go away after the typical 2-3 week period, though, and after months and months of being sick, I was diagnosed with CFS/ME and MCAS. I got the Moderna vaccine in April and it set my (very, very, verrrrrrryyyy slow) recovery back for three weeks or so, but that was it.

I'm not a doctor (well, I am, but not a medical one), but I think that your doctor is giving you excellent advice. I've gone from being someone who was always very energetic to being apartment bound, I've got permanent asthma now, the brain fog that COVID has given me was so bad that for months I wasn't able to remember what I'd done in the morning by the evening, I had to use a special chair in the shower, had to take off half a year at work, etc. Sixteen months after first getting sick, I'm at most only 50% where I was before getting sick, and that's on a good day. You really, really don't want this virus.
 

hapl808

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I've gone from being someone who was always very energetic to being apartment bound, I've got permanent asthma now, the brain fog that COVID has given me was so bad that for months I wasn't able to remember what I'd done in the morning by the evening, I had to use a special chair in the shower, had to take off half a year at work, etc. Sixteen months after first getting sick, I'm at most only 50% where I was before getting sick, and that's on a good day. You really, really don't want this virus.
Sorry to hear that and hope you have a full recovery.

Just keep in mind that many of us here have already gone through the permanent brain fog, chair in the shower, the decade or more off work and life, etc. It's quite likely that there's nothing all that special about COVID, it's just one of many triggers that can cause ME/CFS. I haven't seen any reason to believe that Covid triggered ME/CFS (Long Covid) is different or better or worse than other triggers for ME/CFS. We just were ignored before Covid.

So while none of us want the virus, we're also worried about the potential of the vaccine itself to trigger some of our symptoms. As far as I know, no one has ever properly studied vaccines in general as ME/CFS triggers let alone the specific COVID vaccines, so I sympathize with the concern. We often react to things that others don't, and when we're told, "Oh don't worry, there's no negative effects for that procedure", and then have horrible negative effects - again, no one really believes us let alone cares about it.
 

Learner1

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The survey is missing an option for:

I have been diagnosed with MCAS, and had a normal reaction to the vaccine.

Or I have been diagnosed with MCAS, had a normal reaction to the vaccine, but had a lingering side effect of the vaccine.


I've not had the vaccine so far as I'm worried how I'll react.
In the news yesterday - every single patient who has died from COVID In the state of Maryland and 98.5% of the patients who've died in the state of Arkansas recently were unvaccinated.

The doctor who treats my MCAS advised me that I could be a high risk for death if I were to contract COVID and encouraged me to get a vaccine as soon as I possibly could. He also encouraged me to take all my MCAS meds so I wouldn't have a bad reaction which I did.
I'm not sure if my experience will be generalizable to you, but I'll share in case it is
Thank you so much for sharing your story.
Sixteen months after first getting sick, I'm at most only 50% where I was before getting sick, and that's on a good day. You really, really don't want this virus.
I hope you find some helpful answers in this forum, and find the tools to improve. Best wishes to you and your recovery.
So while none of us want the virus, we're also worried about the potential of the vaccine itself to trigger some of our symptoms. As
My doctor has many, many patients with MCAS, and as long as they take their MCAS meds, they seem to be doing fine. I know of only one patient he advised against it, but that patient has a number of other complicating factors with their immune system.
 

hb8847

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I'm not sure if my experience will be generalizable to you, but I'll share in case it is. I got COVID in March 2020 - prior to that, I had no pre-existing conditions that I knew of, used to run half marathons, and was really physically fit. My COVID didn't go away after the typical 2-3 week period, though, and after months and months of being sick, I was diagnosed with CFS/ME and MCAS. I got the Moderna vaccine in April and it set my (very, very, verrrrrrryyyy slow) recovery back for three weeks or so, but that was it.

I'm not a doctor (well, I am, but not a medical one), but I think that your doctor is giving you excellent advice. I've gone from being someone who was always very energetic to being apartment bound, I've got permanent asthma now, the brain fog that COVID has given me was so bad that for months I wasn't able to remember what I'd done in the morning by the evening, I had to use a special chair in the shower, had to take off half a year at work, etc. Sixteen months after first getting sick, I'm at most only 50% where I was before getting sick, and that's on a good day. You really, really don't want this virus.
I'm so sorry to hear about your experience, it sounds awful.

Just to be clear, I am 100% pro the vaccine, and I'm under no illusions whatsoever about how awful catching Covid can be.

My question was specifically pertaining to the experience of patients with Mast Cell Activation disorders. I have MCAS and it means I can react really badly to things, for instance food - there is currently not a single food I can eat that doesn't trigger some sort of reaction and so my immune system is in a permanent state of alarm. These reactions can get bad enough to put me in hospital with anaphylaxis, so while I'm very keen to not catch Covid I'm also a bit wary of doing something else that might kill me, namely taking the vaccine, given that I'm currently 100% isolated and my chances of catching the virus are very slim.
 
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Sorry to hear that and hope you have a full recovery.

Just keep in mind that many of us here have already gone through the permanent brain fog, chair in the shower, the decade or more off work and life, etc. It's quite likely that there's nothing all that special about COVID, it's just one of many triggers that can cause ME/CFS. I haven't seen any reason to believe that Covid triggered ME/CFS (Long Covid) is different or better or worse than other triggers for ME/CFS. We just were ignored before Covid.

So while none of us want the virus, we're also worried about the potential of the vaccine itself to trigger some of our symptoms. As far as I know, no one has ever properly studied vaccines in general as ME/CFS triggers let alone the specific COVID vaccines, so I sympathize with the concern. We often react to things that others don't, and when we're told, "Oh don't worry, there's no negative effects for that procedure", and then have horrible negative effects - again, no one really believes us let alone cares about it.

Right, sorry I wasn't clearer - I've been reading this forum since mid/late last year and am quite aware of the almost complete neglect and lack of concern from the medical community that people with CFS/ME have been experiencing. This forum has been very helpful to me over the past months. (I got my doctor last September because of a post that someone had made here!) When I said "I'm not sure if my experience will be generalizable to you," what I meant - but clearly didn't explain! - was that I'm not sure if the vaccine experience of someone who has CFS and MCAS because of COVID is generalizable to the potential vaccine experience of people who have never been exposed to the virus. I in no way meant to shrug off concerns and I'm sorry that my post came across that way.
 
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I'm so sorry to hear about your experience, it sounds awful.

Just to be clear, I am 100% pro the vaccine, and I'm under no illusions whatsoever about how awful catching Covid can be.

My question was specifically pertaining to the experience of patients with Mast Cell Activation disorders. I have MCAS and it means I can react really badly to things, for instance food - there is currently not a single food I can eat that doesn't trigger some sort of reaction and so my immune system is in a permanent state of alarm. These reactions can get bad enough to put me in hospital with anaphylaxis, so while I'm very keen to not catch Covid I'm also a bit wary of doing something else that might kill me, namely taking the vaccine, given that I'm currently 100% isolated and my chances of catching the virus are very slim.
It's kind of buried in my original reply, but I have MCAS as well as CFS.
 

Sherpa

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I suspect I have MCAS... a lifetime of stress-related immune system flares, chemical sensitivities, food histamine intolerance...

and I reacted badly to the the Modera Covid vaccine. The second shot caused a major flare where I couldn't work, exercise or think straight. I am 14 days into it and getting slightly better but it was a traumatic experience that left me scared of vaccines.
 

Learner1

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I suspect I have MCAS... a lifetime of stress-related immune system flares, chemical sensitivities, food histamine intolerance...

and I reacted badly to the the Modera Covid vaccine. The second shot caused a major flare where I couldn't work, exercise or think straight. I am 14 days into it and getting slightly better but it was a traumatic experience that left me scared of vaccines.
Did you take the antihistamines and mast cell stabilizers advised by the Clinicians Coalition?
 

Sherpa

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Did you take the antihistamines and mast cell stabilizers advised by the Clinicians Coalition?
@Learner1 are you talking about this? https://www.healthrising.org/blog/2...-chronic-fatigue-experts-coronavirus-vaccine/

Yes, I started taking these about 4 days after the vax. I wish I had know about it before the vax. I think the supplements are gradually helping bring it back down. Today is day 15 and I woke up feeling a little groggy from the antihistamines and a little bit better, but not as great and recovered as I felt before the vax.
 
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Learner1

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Yes, I started taking these about 4 days after the vax. I wish I had know about it before the vax. I think the supplements are gradually helping bring it back down. Today is day 15 and I woke up feeling a little groggy from the antihistamines and a little bit better, but not as great and recovered as I felt before the vax.
I got my info from one of Dr. Cheddar's partners. I was instructed to take them before and after the vaccine, and I know others have done do,, too, with gentler side effects than those who didn't.
 
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Sherpa

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I got my info from one of Dr. Cheddar's partners. I was instructed to take them before and after the vaccine, and I know others have done do,, too, with gentler side effects than those who didn't.
I am taking:
  • Vitamin C
  • Quercetin
  • H1 blocker antihistamine : levocertizine
  • H2 blocker: famotidine
  • NAC
  • Riboflavin
Is this right?

Can you share these instructions from Dr. Cheddar's partners? If it is different than what recommended on the HealthRising post (linked above), What, exactly, did you take?
 
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Learner1

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I am taking:
  • Vitamin C
  • Quercetin
  • H1 blocker antihistamine : levocertizine
  • H2 blocker: famotidine
  • NAC
  • Riboflavin
Is this right?

Can you share these instructions from Dr. Cheddar's partners? If it is different than what recommended on the HealthRising post (linked above), What, exactly, did you take?
The actual instructions I got were to take all my MCAS meds which I hadn't been on in a while except I've been taking quercetin. What I actually took was:
  • diphenhydramine
  • Ketotifen
  • Famotidine
  • Cromolyn sodium
  • Quercetin
  • B vitamins
  • C, E, NAC, ALA, and liposomal glutathione
 

Marylib

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@Sherpa Some people use small doses of quetiapine for intractable sleep problems. I have used a few flakes here and there when things have become impossible, as in hypnogogic hallucinations. As far as I can tell it is an H1 blocker. It leads to depression for me, though, and of course constipation, so normally it's just something I have in the emergency kit. But you may have access to more or better meds than I do to block the histamine receptors.
 

Marylib

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@Jess K I hope you make a good recovery. I'm sure you've read enough on this forum to know what can help. Ironically, there are those who were involved in the vaccine trials who are also now getting this diagnosis and some of the co-morbid diagnoses. It's a very complicated situation. I don't know if they are on this forum. I'm in communication with a man who is trying to help his wife recover after the vaccine trial she volunteered for. The main thing is to take very good care of yourself and remember that people do make at least partial recoveries. Some make full recoveries, so I am told.
 

Strawberry

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I have a strange one…. First vaccine was April 10, 2nd was May 1. I had MCAS flare for both. Now 6 months later my shot site is tender, and my MCAS is flaring horribly again!

Has anyone experienced this?