But I think you mentioned that you were sensitive to medications?
I am an adoptee and have absolutely no medical history but have had many episodes in the or and out due to unknown chemical reactions anaphylaxis. Several times. Last Rights etc. I don’t know if it is something medicine is bound up with or the actual injection.
Do you think you might be able to tell me how you are able to address and control or suggest a doctor or testing ? I travel with my collection of epipens
Thank you!
Susan in Nj❤️
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Tennisbum
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It was on this site that I learned I am allergic to PEG (polyethalene glycol.) PEG is a common preservative found in tons of medicines. I must purchase and use locally compounded lidocaine for dental work. This makes my scheduling challenging as, without PEG, the lidocaine is only useable for a couple of days. Now that I know I hoped I will never descend into anaphylaxis again. HOWEVER, on a trip to a local hospital for a closer look at a GI cyst, I repeated over and over to the nurses that I have a PEG allergy and the contrast dye, ( Definity) must be checked. They said they had checked, but they didn't. ( Or did they think I was making it all up?) I descended into anaphylaxis, got the epipen injections -which did help. And asked husband to leave work to drive me home -which meant more driving the next day to fetch my car. The hospital apologized and told me that nurse was suspended. Now I repeat this story when a new injection is looming including how the nuse was dismissed. So far... no more anaphylaxis.
I will add that although PEG allergies do occur, there are slightly different PEG formulatios depending on manufacturer. Which means that any allergic test for PEG can not be performed.
My eyes are having some trouble, and reading for the last week has triggered migraines.
As it turns out I came on here at the last second to just check urgent issues, and saw this. I’m heading to a doctors appointment.
MCAS, Mast cell activation Syndrome could be an issue.
the compounding process in medications uses “excipients,” or fillers.
There are foods to avoid - not everyone has same issues but there are basics that usually apply to most.
MCAS can be though if “like an allergy” but it’s really an in appropriate response to mast cells in the body. ( in the innate , or primary immune system, as opposed to the acquired, or secondary immune system.)
An immunologist usually works with this and tests for this.
4 body systems can get involved: head( migraine)
Airway, nasal passageway , throat swelling.
Skin: hives, itchin
Gastro- vomiting/ diarrhea
I recommend a book - Never Bet Agains Occam - Lawrence Afrin the best known Dr For this. Dr Practices in a borough in NYC. ( private, expensive.)
you could also see Dr Jill Schofield just outside Denver Colorado. She is a rheumatologist. ( Afrin is a hematologist.)
Dr Schofield works with APS patients, and recognises that about 50% of APS patients have MCAS. She is one of my rheumatologist. I saw her to trial apixiban. ( she is an advocate for some patients who fit certain criteria, and stresses that some patients will not and should not ever be on it.) we simply tried it under close supervision and I failed it miserably and quickly. I only tell you this so you know why I went to see her- not for MCAS.
She brought it to my attention, and I did meet the criteria. She very very big into MCAS, and very competent.
I suspect it is an excipient in the epi pen. Different manufacturers may use different excipients.
There is a non profit called TMC force I think it is… I- it’s on face book. It’s both mastocytosis and Mast cell activation syndrome combined. ( mast cell diseases combined resource page.)
Just their information page is very useful. See if you can find it.
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