[modeless]

The study lasted 20 weeks, but I believe you have to continue the treatment indefinitely if you want the effects to continue. It's not a permanent fix, and a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

[kelnos]

I do non-food allergy immunotherapy once a month, and have been doing it for the past 3.5 years. I really don't mind going in that often, and the benefits are well worth it to me. I only have to go another 1.5 years before it's common to see diminishing returns for continuing longer, but if I had to do it for the rest of my life, that'd probably be ok.

[modeless]

I am doing the same and if it was for the rest of my life I wouldn't have started. The burden is just too high to justify it for my level of allergies. I'm kind of regretting it even though it did cure my allergies, I kept getting injection site reactions and having to go through up dosing repeatedly. It's a sunk cost now though.

[spondylosaurus]

> a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

I take this exact drug for not-even-life-threatening allergies and the hassle is really not that bad. It's certainly less annoying than suffering through ragweed season every year :P

[JaggedNZ]

I have mild asthma, a host of other "mild" (aka. non-life threating) seasonal allergies and oral antihistamines are becoming less effective as I get older. I will be talking to my doctor about this medication. I'm interested in your experience if you don't mind sharing more? Any improvements to contact allergies?

[spondylosaurus]

I'm not positive if I have any contact allergies, though I do have a lifelong tendency for eczema, which has improved a lot on Xolair.

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.

[JaggedNZ]

Thanks so much, sounds like we have quite similar allergies and symptoms, I can really relate to having weepy messed up eyes and comments from strangers! Funnily enough, I think I should hopefully qualify for it with my Asthma + IgE levels, that it could help my eczema would be a big bonus.

I tried allergy immunotherapy (aka. "allergy shots") but it was very rough and it aggravated blood pressure issues and gave me joint pains, so I opted to discontinue after the second attempt.

On hydroxyzine, I've taken cetirizine (2nd gen, metabolite of hydroxyzine) in the past. 1st gen antihistamines usually knock me out. I'm now on Fexofenadine (Allegra, Telfast) which is mostly covered by my insurance and works pretty good still.

One crazy thing for eczema sufferers, if you get bad eczema on neck and arms during summer don't assume you have a heat rash, patch test your sun screen. I now use zinc based sun screen after a dermatologist patch test identified I was allergic too Oxybenzone's. Never has a clue and I live in a country with very high UV levels.

[looping8]

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.

[bennyg]

Yeah this is one of those perspective things. I’m on a once-a-month regimen of eyeball injections to stave off macular degeneration. I’d trade it in a heartbeat for allergy-reducing injection. But even my case feels “routine” now.

[modeless]

I am not optimistic. The pace of progress in the field is very slow. Barring an AGI-induced revolution in medicine (not out of the question) I think the chances of curing common allergies in my lifetime are not super high.

[MrYellowP]

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.

[twothamendment]

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."

[lotsofpulp]

>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

Then why are there permanent cures credited to pharmaceutical companies such as

https://en.wikipedia.org/wiki/Sofosbuvir

[Broken_Hippo]

First things first, pharma companies are OK with cures. Cures bring money as well, and some cures bring them patient trust.

Pharma companies aren't the only factor here either. Insurance companies, patients, and governments are definitely invested in cures. Preventative measures are OK with these groups as well - vaccines are one of these. Not all research is by big pharma either.

You are assuming other things bring magic profit when they don't do that as efficiently as you think.

Curing one disease doesn't cure them all, and there would still be profit to be made off of your other sicknesses. Probably especially those tied to lifestyle.

You are also assuming that we know how to cure the diseases we have treatments for. This is the real reason we don't have more cures - we know a good deal about the body, but there is a good deal we simply don't know.

It isn't that I think these folks are innocent - I have anger towards those exploiting sick folks to make obscene profits and the industry is greedy - but I don't buy your argument at all. It doesn't allow for the nuance that actual life has and only works if you don't look below the surface.

[Madmallard]

The heads of J&J and Pfizer would absolutely love it if their family members didn’t also get and die of illnesses like cancer and heart disease.

[DinaCoder99]

> It's not a permanent fix, and a once or twice monthly injection for the rest of my life is not something I'd like to sign up for.

Seems better than dying of anaphylaxis but what do I know.

[modeless]

The risk of dying from anaphylaxis is almost universally exaggerated. There is a lot of fearmongering about it, especially for parents.

The truth is, even for food allergic people, the risk of death is low compared to other causes. EpiPens are very effective. Also, anaphylaxis is a very temporary condition. If you do get anaphylaxis then after a very short recovery period there are zero long term effects to worry about.

It's questionable whether intensive and risky treatments are warranted in most cases (remember Xolair carries its own risk of anaphylaxis).

[Antipodes456]

Yes but that's not the full story... .It's true that the odds of dying from anaphylaxis are low, IF treated in time.

The sad thing is that the vast majority of all deaths from allergic reactions are preventable.

Things like not acting immediately and injecting Epipen in the first few minutes, not following up with a 2nd shot if no improvement in 15min. Having expired pens. Kids grow, and need larger pens. Teacher panics and uses pen upside down. Kids try foods as a teen or when they leave home as they "used to be allergic"

As the parent of an Parent of anaphylactic 7 year old - the fear is real. Low odds, but catastrophic outcome.

We are lucky that my partner is a nurse and we are knowledgable and manage places we go, but daycare, schools, birthday situations etc are a worry

*edited - typo

[washadjeffmad]

My friend's son went into anaphylaxis while out with his girlfriend, and even though she carried a spare pen, the needle bent when it hit a seam in his pants, rendering it unusable.

She called sobbing that she'd killed him, but someone had an expired pen, and he ended up okay after getting to the hospital. Still, you never know if it could be the one.