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Anyone with MCAS get the covid vaccine?

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Posted 4/10/2021 1:41 PM (GMT 0)
If you have MCAS and you've gotten the covid vaccine I'd love to hear how it went. I know clinical trials just began on mast cell patients as so many were having bad reactions. Its a tough call on whether to get one or not. Thanks!
Posted 4/11/2021 3:21 PM (GMT 0)
Very interested in this too. Since I react to anything that has to do with the immune system I am reluctant to get a vaccine. I flare from vit c, vit d, magnesium so it is a tough call.
Posted 4/11/2021 6:58 PM (GMT 0)
Also following this, hoping people reply!

I have a chance to get the J&J vaccine tomorrow, and I'm not sure whether to do it. Until my child can get vaccinated, my family's day-to-day life won't be changing anyway - still very isolated, masks, distance, everything outdoors, etc. - so the main difference being vaccinated would make for me is that I'd feel more comfortable getting necessary medical and dental care that I've been putting off for a year.

With MCAS, dysautonomia, and a tendency toward cytokine storms, I am worried about the vaccines but even more worried about COVID itself. I think it's unlikely that I'd have an allergic reaction to the vaccine but will plan to monitor myself carefully for at least a few days afterward. My symptoms have been very manageable lately, but like many people in my area without MCAS, I'm experiencing some seasonal allergies right now (a few sneezes and slightly itchy eyes, but mainly a very foggy brain if I go outside without an N95 mask on). I'm loading up on quercetin, but wondering if the ongoing histamine situation from tree pollen would predispose me to over-reacting to the vaccine....
Posted 4/12/2021 12:31 AM (GMT 0)
DMW52 I react to so many things too, definitely not stable which makes it hard to know what to do. It can take so long to get back to an improved baseline after a bad flare up. I am leaning towards not getting one and I can logically get my head around herd immunity and the odds of catching covid being greatly reduced down the road but the contagion race to get vaccinated is overwhelming.

Saraeli, I know what you mean about not being in a hurry with masks and distancing here for a while. I could have gotten it a while ago since I am immunocompromised but felt like you do in regards to your family. And yes, feeling able to go to needed appointments. This really has been a crazy time, like living in a science fiction movie.

In terms of seasonal allergies, pre-medicating beforehand with allergy meds should help. I am glad your mcas situation is under control right now. If you get it tomorrow, let us know how it goes. Take good care!
Posted 4/12/2021 1:23 AM (GMT 0)
I created a poll in the SFN FB page. It wasn’t directly about those w MCAS, but many w SFN have MCAS and or some other inflammatory condition.

Results:
-60 people said the vaccine “did not flare their symptoms/would recommend”
-10 said it caused a “temporary uptick in symptoms/would recommend”
-1 said it “caused a long lasting uptick in symptoms/new autoimmune symptoms/would not recommend”.

This data was enough to convince me to get it, as it certainly implies the risk of not getting it and catching covid is higher. I know it’s not exactly MCAS but these things all overlap and figured I’d share

I’d go w Pfizer or Moderna over J&J

Post Edited (dcd2103) : 4/11/2021 7:26:45 PM (GMT-6)

Posted 4/12/2021 4:33 AM (GMT 0)
I had my first vaccine last Saturday, Pfizer. This vaccine affected me similarly to the standard flu vaccine. I didn't experience any big problems but I think the shot contributed to a week long dip in energy.

I worked so hard to get my Covid appointment, and then waited in the Disneyland-like lines for two hours, that I was surprised to give a bit of pause when it was time to embark on the ride...
But I'm ok!
I've had reactions to medicines & allergens. MACAs, DAO, herbal med reactions, etc. I once needed an ambulance for an anaphylactic like reaction to penicillin G IM shot, scary.
So I did ask the nurse to put the needle in and wait a while. I can often feel the reaction coming this way if my body is 'pre-decided' on overreacting. She then administered a few drops and waited, and then gave me the rest, which could have been sped up. That day I did an extra errand, to Costco no less, and I felt fine.
The next day I felt sicker overall and took to bed fatigued. I stayed stuck a few days and improved back to baseline in about a week. During this time I resumed my Lyme treatment at full dose. I'm happy I did this vaccine for the piece of mind and freedom. I don't think I'll get the 2nd vaccine because they automatically schedule it exactly 4 weeks out without alternate choices and I'm not available to recoup another week then. I have heard tho that it's the 2nd shot of Moderna vaccine that hits hardest. I believe effectivity goes from 74% to 90+% from 1st to 2nd vaccine.
Best wishes!

Post Edited (SC Gal) : 4/13/2021 11:59:27 AM (GMT-6)

Posted 4/12/2021 5:57 PM (GMT 0)
Just got the J&J vaccine a bit ago, with no immediate reaction. I'll let y'all know if anything happens! I know it's not a bad sign to react to a vaccine, but after being sick for so long, it's so hard to do something voluntarily that is likely to make me feel bad, even for a few days! Please send me harmonious immunity vibes!
Posted 4/12/2021 6:32 PM (GMT 0)
Saraeli, good for you, sending you healthy vibes. Keep us posted on things!

DCD, thank you for sharing the poll, it is very helpful, I appreciate it.

SC Gal I am glad that you are good and handled it well! One dose seems to be fairly effective.

Thanks for the replies!
Posted 4/13/2021 11:42 PM (GMT 0)
i have, the pfizer one. no major issues, just terrible headache after 1st dose
Posted 4/14/2021 1:26 PM (GMT 0)
Mpost, this is great to hear, I am glad it went well for you! Do you have MCAS?

Saraeli, I hope you are feeling good post-vaccine. I am sure you are glad to have it behind you.
Posted 4/14/2021 2:26 PM (GMT 0)
On Monday afternoon I got the J&J vaccine. Awful chills and headache started that night, some nausea, woke up with a fever around 100 (usually 97.5) that went down gradually throughout the day. Tachycardia, slightly low pulse ox. (Also didn't love reading the news that use of a vaccine I'd had hours ago had been suspended.) Feeling mostly better today. Nothing MCAS-specific has happened so far.

My immune system knows how to turn on, so let's see if it knows how to turn itself off again.... Honestly I'm more worried about what happens next for me, since many of my immune system over-reactions (cytokine storms, a Guillain-Barre-like neurological episode, etc.) have happened 2-3 weeks after the offending virus. Crossing my fingers! Just reminding myself that this is way less risky than getting COVID would be for me, given my history.
Posted 4/15/2021 5:35 PM (GMT 0)
Best wishes for no further reactions Saraeli. Please keep us posted.
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