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FDA approves first medication to reduce allergic reactions to multiple foods

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Re: FDA approves first medication to reduce allergic reactions to multiple foods

#121

Earlier quoted context omitted.

We can hope it's not for the rest of one's life but only until a better solution is found. For people with deadly allergies, a few years of injections might not be too big of a price, I think.

Why would any of the pharma companies out there want to invent a permanent cure, when there's far more money to be made with a cure that is not permanent? Makes no sense. A one time customer isn't lucrative.

My wife has been on Xolair for about a year, monthly injections (more would be nice, but that is all we can get from insurance). In her case, MCAS (Mast cell activation disorder) her body reacts to everything as if it were a food allergy - even though she isn't allergic to these foods.

They don't know the root cause for MCAS, so they sure don't have a cure or barely a clue it seems.

She lives a very restricted lifestyle, can't go in public places were people have perfume/strong smelling products on, can eat about 25 different ingredients (including a few spices), so eating out is not an option. A ripe banana in the room is enough to set her off and the impact is usually 2-3 days.

Xolair had allowed her to feel like a normal(ish) person - as long as all of the restrictions are followed.

Yup, it sucks to have to inject her monthly to have something that resembles normal and is in no way a cure - but I'll take it. Treating symptoms is far better than treating nothing. But a cure? If shell out quite a bit for that!

Copy paste for those wondering what MCAS does to a person. "MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea."

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#122

Earlier quoted context omitted.

Interesting. I looked at a dosage chart and it seems like you do either once or twice a month based on your IgE level determined by a blood test. So it is twice a month for some people.

Ah, I do get two shots a month because my IgE was wicked high, but I get them both at the same time. One in each arm!

My wife also gets 2 a month, on the same day, but I get to stab her in the gut. Good times!

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#123

From what I read of this, it's very expensive (thousands/mo), requires at least monthly injections at a facility, has a risk of anaphylaxis (so the injections can't be done at home), doesn't eliminate the risk of allergic reactions, and has no off-ramp (so you have to take it forever). Not exactly a silver bullet... My first thought was that it could be good for kids, who are less good at checking for trace amounts o…

Injections can be done at home, after you do some at the office and you get your doctor to agree. My wife gets it shipped to our door each month.

In her case, this doesn't cure anything, but manages symptoms of MCAS. Not ideal, but way better than life without it.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#124
post #8

I've been following this closely. I'm most interested in Xolair (and another one, Dupixent) as a way to make oral immunotherapy (OIT) safer and more effective. Xolair can reduce reactions for sure, but it can't get people to the point where they can actually eat normal serving sizes of their food allergens. Oral immunotherapy can do that. And Xolair is a twice monthly injection. Nobody wants to do that for the rest o…

I'm not sure of the current progress, but I was at a conference a couple years ago, and the Dupixent folks were presenting. It was right after the approval for pediatric atopic derm, and they were hopeful that for people with severe allergies, they could essentially use dupixent to wipe out the immune sensitivity to allergens and then retrain. This is pretty extreme, so you'd only want to do it in patients with life-threatening allergies, but it was an interesting plan.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#125
post #95
post #61

Earlier quoted context omitted.

This might be true for people in general, but people who have been diagnosed with Celiac disease are definitely allergic to wheat.

Not wheat, gluten edit: for the downvotes, https://en.wikipedia.org/wiki/Coeliac_disease > where individuals develop intolerance to gluten > Coeliac disease is caused by a reaction to gluten > While the disease is caused by a permanent intolerance to gluten proteins,[10] it is distinct from wheat allergy, which is much more rare

Not even gluten, one of the peptides it is composed of. Prolamins like gliadin, horadin, etc. depending on the grain. This is why gluten denaturing proteases aren't sufficient to protect a celiac, and thus some technically GF foods aren't necessarily safe.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#126
post #42

It's a 16 to 20 week course of treatment and reduces risk of anaphylaxis for accidental exposure to food allergens. There is at least one other drug that is used to treat peanut allergies, but this treats multiple food allergies. Given that anaphylaxis can be deadly and staff at food places can be sometimes less than reliable about food allergy concerns, I can see this being appealing to someone with severe food alle…

> staff at food places can be sometimes less than reliable about food allergy concerns As someone with Celiac disease, who often eats at restaurants, this is a bit of an understatement. Even in restaurants where things are marked allergen free on the menu, it is often the case that staff will make mistakes. More often than not, staff aren't even informed about the basics of food, things like eggs and dairy being two…

I am so sorry. I was a server... 20 years ago holy crap... I've been that server. They asked if something was safe for celiac. I had no idea, nobody else did either.

Today, my partner is a severe celiac. Any traces of gluten takes them out for at least 2 weeks. Any hesitation from a restaurant from a restaurant and we are gone.

I think that person ended up ordering. Of course literally nothing in that restaurant was safe for celiac if for nothing else than cross contamination.

So sorry.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#127
post #42

Earlier quoted context omitted.

> staff at food places can be sometimes less than reliable about food allergy concerns As someone with Celiac disease, who often eats at restaurants, this is a bit of an understatement. Even in restaurants where things are marked allergen free on the menu, it is often the case that staff will make mistakes. More often than not, staff aren't even informed about the basics of food, things like eggs and dairy being two…

> staff at food places can be sometimes less than reliable about food allergy concerns In 2000, I was working at an NYC restaurant (Josie's on Third) -- it was a new non-dairy health-focused organic-everything restaurant. The waitstaff was trained in all the ingredients and many of the sources and were highly conscious of needs of our customers. We were tested on it a staff meal. One day, two friends sat to dine... w…

I remember Josies... nice place back then

Definitely odd that a person with a severe sesame allergy didn't know about tahini - she can't even eat hummus

That said, I suppose decades back such foods were less mainstream and/or she was new to the allergy

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#128
post #99

Earlier quoted context omitted.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945755/ "Glyphosate, pathways to modern diseases II: Celiac sprue and gluten intolerance" Here, we propose that glyphosate is the most important causal factor in this [celiac disease and gluten intolerance] epidemic.

Did you read the paper? My guess is no. Classic HN, references a paper as if the conclusions are fact and all references are equivalent. This is a paper where the authors did no experiments of their own, just put forth a hypotheses. The lead author is an “independent scientist”. Suffice to say I’d be very suspect of the conclusions drawn.

> The lead author is an “independent scientist”.

The other one: https://en.wikipedia.org/wiki/Stephanie_Seneff

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#129
post #8

I've been following this closely. I'm most interested in Xolair (and another one, Dupixent) as a way to make oral immunotherapy (OIT) safer and more effective. Xolair can reduce reactions for sure, but it can't get people to the point where they can actually eat normal serving sizes of their food allergens. Oral immunotherapy can do that. And Xolair is a twice monthly injection. Nobody wants to do that for the rest o…

I get hay fever every Spring so I hope this field gets FDA approval, would be nice to not have to deal with a stuffy nose for an entire season.

Re: FDA approves first medication to reduce allergic reactions to multiple foods

#130
post #42

Earlier quoted context omitted.

> staff at food places can be sometimes less than reliable about food allergy concerns As someone with Celiac disease, who often eats at restaurants, this is a bit of an understatement. Even in restaurants where things are marked allergen free on the menu, it is often the case that staff will make mistakes. More often than not, staff aren't even informed about the basics of food, things like eggs and dairy being two…

I am so sorry. I was a server... 20 years ago holy crap... I've been that server. They asked if something was safe for celiac. I had no idea, nobody else did either. Today, my partner is a severe celiac. Any traces of gluten takes them out for at least 2 weeks. Any hesitation from a restaurant from a restaurant and we are gone. I think that person ended up ordering. Of course literally nothing in that restaurant was…

TBH I don't think a server should be responsible to know all these things.

They should be able to answer specific questions or find out from the Chef. Ultimately it's up to the customer to understand the risks of eating out.

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