FDA approves first medication to reduce allergic reactions to multiple foods

Out of curiosity I looked at actual case rate numbers: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5589409/ Less than 200 a year and more than half from drug related allergies. That's getting into death from lightning strike numbers or deaths from chicken pox.

(Obviously, this doesn't factor in the specific risk to someone with a known allergy, or without access to Epipens/care. But still a pretty low risk compared to the attention it gets.)

I also found a statement put out just last year by the American College of Allergy, Asthma & Immunology:

> "Injectable intramuscular epinephrine is the first-line treatment for anaphylaxis. Epinephrine is touted as "life-saving," in particular because observational studies have identified lack of prompt epinephrine treatment as a critical risk factor associated with anaphylaxis fatality. Although association is not causal, few would argue that epinephrine is not the optimal treatment for anaphylaxis, and do we have sufficient proof to suggest that epinephrine is actually "life-saving"? Epinephrine indeed works swiftly to reverse such symptoms of an immediate allergic reaction. However, there are abundant observational data that many cases of anaphylaxis are inherently self-limited and may resolve within 1 to 2 hours in most cases with or without treatment. In this perspective, the intent is to address and reframe the reality of the evidence we do have for what epinephrine does and does not accomplish and provide a perspective regarding the common "dogma" regarding the drug. There is a danger in using terms such as "life-threatening" and "life-saving" for anaphylaxis and epinephrine treatment, especially under the caution of frequently cited rhetoric that subsequent reactions are likely to be progressively more severe or potentially fatal. Use of such descriptions risks negatively polarizing our patients and adversely affecting their quality of life, given these terms can potentiate unnecessary fear. Epinephrine is in fact a wonderful drug, but it is important to not lose sight of the evidence for what it actually does in anaphylaxis treatment and why it is important to use this drug in anaphylaxis, as opposed to an emphasis on what it does not do."

> The delayed use of epinephrine, identified as a significant feature in several reports of fatal food anaphylaxis, is perhaps the risk factor most amenable to modification. This has, in part, driven the widespread provision of epinephrine autoinjectors for the management of anaphylaxis, although controversy exists as to their use in less severe, nonanaphylactic allergic reactions.

Your logic seems to be "because anaphylactic deaths are low, epipens generally aren't useful". It may be true that they're used too often - knowing what to do in the moment when your kid is swelling up, having trouble breathing, throwing up, or passing out, especially if they're very young or not verbal, is a challenge and an experience I don't wish on anyone. But the way I interpret the data is that anaphylactic deaths are low precisely because epipens are so commonly used and there is so much awareness and training around when/how to use them.

For background: I actually went on Xolair to treat eczema, which is an off-label use, but my IgE antibodies were high enough thanks to 5000 environmental allergies (mold, pollen, dust, more dust...) that they got my insurance to approve it under standard criteria. I also have asthma, which is one of the things it's approved to treat, so that might be a good pathway to approval and a symptom you can reduce.

Prior to Xolair, my skin used to get so fucked-up and dry that my eyelids would crack and bleed and weep some kind of liquid. On more than one occasion I had strangers ask me if I had lupus because it looked like I had the characteristic butterfly rash. And I'd get miserable allergy symptoms whenever it was windy (which is often, since I live in a valley) or I was around environmental triggers (which is also often, since I'm allergic to pretty much everything that grows in this biome).

After being on Xolair, I have pretty much zero problems with eczema (although the TNF inhibitors I started taking for general autoimmune shit share some of the credit there) and my allergies are all but gone. It's wild. I actually forgot about how shitty I used to feel in windy weather until I looked outside, saw that it's windy today, and was like "Oh yeah, that used to mess me up...."

Dust doesn't fuck me up the way it used to; when I vacuum under the bed, I can feel something happening in my skin, like the sensation of breaking out in the mildest of sweats, but otherwise it doesn't bother me. My pollen tolerance is also significantly better—we actually started growing some pepper plants indoors, and it's the same thing where I can almost feel the pollen coming off them when I get really close, but I have to be within two feet to notice and it's not, like, unpleasant. More like a sixth sense.

My asthma might be a little better too, but it's hard to say. I've been able to exercise more easily than I ever could when I was a kid, although I was a pretty wimpy kid in the first place, lol.

So, long story short: I'd definitely recommend Xolair! Other than the requisite insurance hassle and having to spend a few hours every month getting my shots, zero complaints here. One of the best success stories I've heard is that my allergist had a patient who was a professional archeologist with terrible allergies, but after going on Xolair they were able to go on digs without issue.

Also, regarding oral antihistamines, have you tried any Rx drugs like hydroxyzine? My allergist put me on 35mg of that nightly and it knocks down anything the Xolair wasn't already doing. My partner also takes it and it's helped their significantly-less-severe allergies as well, plus zafirlukast for polyp-spurred inflammation.

The family that introduced us to TIP had struggled with OIT. Fwiw TIP claims 99% success rate versus OIT's ~80%, but I understand this is the very contention point being discussed here. FAI does report TIP statistics (https://public.domo.com/embed/pages/X6NX5). Anecdotally from my 6 years as an (adult) patient at FAI, the "99% success rate" seems entirely plausible to me; it is very rare to hear of complications -- for example almost nobody on the internet makes posts about negative TIP reactions because everyones experience is indeed overwhelmingly positive.

However, none of this dismisses it's a huge bummer FAI isn't getting TIP clinically proven right now -- it'd be a much easier sell to prospective families than needing them to chat with other parents on Facebook about how really legit it is.

Deciding to not trust TIP is also totally fair. Everyones journey with food allergies are different. Completing TIP also takes an extraordinary amount of personal sacrifice too (I for one took a gap year away from school to finish). But as another food-allergic who's scientifically minded and initially thought "where's the research to back this up" too before enlisting, I feel almost obligated to share my story.