PS. To clarify, it's not recommended to take the antihistamines BEFORE you receive the vaccine.
It is actually the opposite and people with a history of allergic reactions or MCAS would want to pre-medicate with an H1 blocker (anti-histamine) prior to getting the vaccine.
I had been waiting on J&J and was getting ready to sign up but knowing my history with little blood bleeds/clots of capillaries in skin post-viruses (petechiae, pupura, cherry angiomas) I just don't want to risk it, even though chance of a bad event is so slim. I know my own body better than anyone who tells me not to worry about it. I do think adenovirus plus covid-19 spike proteins is too much considering my reaction to adenovirus alone.
I 100% agree that no one knows your body as well as you do and I would also avoid the J&J vaccine if I was in your shoes and had a known history of little bleeds/clots, petechiae, purpura, etc.
I'm going to try and wait a little longer than the 30 minutes since I live so far away from the hospital. That's the part that makes me nervous. I don't have an epi-pen and I'd be nervous to inject one myself if I did!
I know this might not be relevant for your situation but I want to post it here in case it is helpful for anyone else. Even though I will not be getting the vaccine, I spoke to my doctor about what I would need to do in the future if that ever changed. He said that because of my history of anaphylaxis, I could only get the vaccine in a hospital setting that had full access to Epi and all emergency resuscitation equipment. I would also have to pre-medicate with IV Benadryl prior to getting the vaccine.
The Mast Cell Society's guidance is take an h1 one hour before vaccine.
This is correct (although the exact time interval might not be one hour for everyone). If it was IV Benadryl vs. an oral H1 blocker you could probably have it 20 to 30 min prior to the vaccine.
The recommendation of not talking any pain killers or antihistamines prior to vaccination is the current medical recommendation (not MCAS related.) I believe it's to not mitigate the effectiveness of the vaccine.
I have read every piece of info I can find on this topic (including from the mast cell societies/groups in different countries) and have not seen anything stating that taking painkillers or antihistamines prior to the vaccine can mitigate the effectiveness of the vaccine. Do you have any links for this? (I truly want to read about it if this info is out there).
One thing that is being very strongly recommended is not to get any OTHER vaccines at the same time as the COVID vaccine b/c this can trigger an even bigger immune response and/or allergic reactions and also make it unclear which side effects are coming from the COVID vaccine alone (but that is a different issue).
"Antihistamines (e.g., H1 or H2 antihistamines) and bronchodilators do not treat airway obstruction or hypotension and, thus, are not first-line treatments for anaphylaxis. However, they can help provide relief for hives and itching (antihistamines) or symptoms of respiratory distress (bronchodilators) but in a patient with anaphylaxis should only be administered after epinephrine. Administration of antihistamines to COVID-19 vaccine recipients prior to vaccination to prevent allergic reactions is not recommended. Antihistamines do not prevent anaphylaxis, and their prophylactic use may mask cutaneous symptoms, which could lead to a delay in the diagnosis and management of anaphylaxis.
This is very strange and poorly worded advice from the CDC in my opinion. It is correct that an antihistamine would not treat airway obstruction and if someone was having anaphylaxis where their throat was closing up, then Epi would be administered immediately to attempt to save their life (and it would be far past the point of taking an antihistamine).
But taking an H1 blocker (and ideally a combo of H1 blocker, H2 blocker, and mast cell stabilizer) PRIOR to being exposed to a potential allergic trigger is standard protocol as prophylaxis. That is why someone would get IV Benadryl (and sometimes IV steroids) prior to having contrast dye or a blood transfusion or anything known to trigger an allergic reaction. I got infusions for 3+ years at an excellent infusion center (that was also a cancer center) and this was standard protocol.
Because anaphylaxis may recur after patients begin to recover, monitoring in a medical facility for at least four hours is advised, even after complete resolution of symptoms and signs."
I completely agree with this and anaphylaxis can be biphasic and the person should be monitored in a hospital for at least four hours (if not more) after having anaphylaxis.
Seems as if it's time for the vaccine manufacturers to start providing those of us who haven't been jabbed yet with a version made for the new spike proteins. Seems a little wasteful to continue to be jabbed with the original version.
I agree with this, too. At some point they need to create new vaccines for all these COVID variants instead of people (who haven't been vaccinated yet) having to get BOTH the original vaccine and then soon after get the new one.
@Booble woah really confused. In mcas, h1 and h2 medicines are taken before various kinds of things that may elicite any flare including anaphylaxis. It's an important principle of management and I don't know why this contradicts that.
I am baffled why that was contradicted by the CDC as well. My former MCAS specialist set up a regime for me in which I had a rescue med (Atarax or Benadryl) to be taken in order to avoid getting to the point of using the EpiPen. It was taken as a prophylaxis for anything that might even remotely trigger an allergic reaction to be safe and I just had IV Benadryl two weeks ago prior to an outpatient surgery just in case I was allergic to anything used in the procedure.
I know the advice from the CDC is not for mast cell diseases, but it's the opposite of mast cell disease recommendations for both this vaccine and in general. Yes our mast cells behave differently but still, the principle of those medicines helping prevent anaphylaxis should be the same no matter who it is.
I agree that the concept would be the same whether someone had MCAS or a true IgE mediated allergic reaction.
A nurse at the vaccine clinic today at a major hospital was talking about premedication for anaphylaxis and it wasn't even about me (I want to share this story later of what happened. Someone possibly with mcas had an anaphylactic reaction right next to me. It was an unbelievable coincidence.). And in general Benadryl is a first line treatment for anaphylaxis before it reaches a certain point, and that's an h1? Can't remember.
That is correct. Benadryl (diphenhydramine) is a first generation H1 antihistamine. It is much stronger than 2nd generation H1's like Zyrtec, Allegra, or Claritin.
I always thought pre-medicating was a good idea as well. When I was told I was allergic to CT Contrast Dye I asked them what that would mean if I needed it again. They said they'd tell me to take a Benadryl beforehand. Now granted my reaction was hives so maybe that's why?For my seafood allergy nobody ever suggested taking a Benadryl and then going out and eating lobster.
I can only speculate that they were talking about a protocol if you needed contrast dye in a medical emergency (where it could not be avoided) vs. eating shellfish or lobster can be completely avoided?