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Hyposensitization

Started by Matthew Parker8 · · 👁 5 views · 34 replies

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Participants Matthew Parker8William Doyle2Kimberly Adams81dustycanyon6nimbleskipper17coastalowl80Chris Morgan67velvetwolf92redcrane6granitebadger25Ashley Flores80Rachel Davis32Kyle Diaz28Jeffrey BennettJerry Grant2jadewalker112Aaron Collins25Amanda Lopez7Scott Collins2
Matthew Parker8 Matthew Parker8 MemberOP
13 messages
joined Oct 2004
#1 ·
Starting early next year, I’m scheduled to begin desensitization therapy for ragweed (roughly 7-9 months)
The doctor claims there aren't any significant side effects—but frankly, I’d rather hear about actual experiences from people who have been through this.
Did anyone run into issues? Did it actually work for you? And how did you deal with the hassle of heading in twice a week for shots?
If there’s anything else I should know, please share...
Thanks.
William Doyle2 William Doyle2 Member
14 messages
joined Sep 2006
#2 ·
They had me doing that back in elementary school, and I stuck with it for about a year before I just couldn't take it anymore.

The biggest issues were:
-finding the time to actually go
-the waiting rooms are always massive
-the nurses can be pretty rough, like they have a personal vendetta against you
-your arm swells up and hurts (though, honestly, I don't know if you'll react the same way)

There aren't many upsides. I mean, maybe you get better in the end—but I just didn't have the patience for it...
Kimberly Adams81 Kimberly Adams81 Newcomer
4 messages
joined Apr 2011
#3 ·
I dealt with this stuff for about 10 years because of my allergies to dust, pollen, cigarette smoke, and all that. Most of the side effects are exactly what William Doyle2 mentioned. But honestly, if you have a sister who's good with a needle, I don't think you'll run into any real issues. You might just end up with a little bruise on your arm. Anyway, I really hope it helps you out!
dustycanyon6 dustycanyon6 Active Member
82 messages
joined Dec 2005
#4 ·
William Doyle2 said:The biggest headaches are usually:
-finding the actual time to go
-the waiting rooms are always packed
-clumsy nurses who jab you like they have a grudge against your whole family
-your arm swelling up and throbbing (though, honestly, I don't know if that happens to everyone)

It really just depends on which clinic you end up at (in Cleveland, things aren't too crowded) and how your body reacts—especially regarding that arm swelling thing.

For me, it’s mostly been a good experience... though before I started allergy shots for dust mites, life was pretty miserable. During the winter, I’d deal with a stuffed-up nose for two or three months straight without fail! Maybe I gave up a little too early, too, since I stopped after about three years... but even after just one year of shots, those issues mostly cleared up. It didn't totally cure me, but it definitely helped...
nimbleskipper17 nimbleskipper17 Member
34 messages
joined Mar 2005
#5 ·
I was also in that same boat, going to those appointments about twice a week when I was seven or eight. Honestly, it wasn't even a big deal to me at the time; it was just part of the routine from as far back as I can remember, and I figured that’s just how life worked. 🙂 My mom felt a bit more awkward about it, though—having to show up to her job an hour late twice a week because of my schedule. She was lucky, though, since her colleagues at work were incredibly laid back about it.

As far as I recall, I didn't suffer any side effects. The nurses in the clinic were mostly pretty cool, too; they all knew me by name, and I was on such friendly terms with them that I used to address them quite informally. 😁 Such happy childhood memories... 😉

Well, even though it wasn't some traumatic experience or anything, none of that treatment actually helped much. If anything, things just seemed to get progressively worse. My allergy situation didn't suddenly improve until I moved out to the coast, and I'm doing mostly fine now.
Kimberly Adams81 Kimberly Adams81 Newcomer
4 messages
joined Apr 2011
#6 ·
I feel like the only thing that actually ties us together is how we’ve both just been treated like little pincushions😁
Matthew Parker8 Matthew Parker8 MemberOP
13 messages
joined Oct 2004
#7 ·
So, I just had my first experience with Chase
It doesn't seem quite as bad as people say
Hopefully, it actually turns out to be useful
Thanks for the input
Best 👋
coastalowl80 coastalowl80 Newcomer
7 messages
joined Jul 2006
#8 ·
I live with allergic asthma. When I was little, I had skin patch testing—you know, where they apply drops of potential allergens to your forearms to see how your blood reacts—and just two years ago, they did a blood test to measure my sensitivity levels. It turns out my dust mite allergy was sitting at some crazy number around 1000 (don't even ask), which was terrifyingly high. Since then, I’ve been undergoing immunotherapy, which has been going on for two years now. The problem is, I don't feel any better. Not even a little bit. I actually have to order my injections from Germany via Austria (and trust me, the price is insane), and they are custom-made specifically for each patient. Even then, they barely release them because they’re supposedly incredibly potent. I keep pushing my doctors to let me re-test so we can see if there's any actual progress, but they just keep promising it and then delaying it. I know people who have been doing this immunotherapy for eight years straight. For some, it works; for others, it does nothing, or they end up developing a new allergy that's even worse than the first one. Now, I'm about three weeks late on my last injection. I'm supposed to start shortening the intervals again before gradually moving back to once a month, but honestly, what's the point? If you ask me, I'd rather just give up on the whole thing.
Has anyone else dealt with this? Do you have any insights or recommendations on how to handle it?
Chris Morgan67 Chris Morgan67 Member
49 messages
joined Jul 2007
#9 ·
I spent some time looking into that... but I gave up pretty quickly. It just didn't seem worth the hassle after a few years, especially since the results are always so hit or miss
coastalowl80 coastalowl80 Newcomer
7 messages
joined Jul 2006
#10 ·
Yeah, I guess I'll stop too. It just doesn't seem worth the effort anymore.
I honestly just thought there might be more of us here...
Best,
nimbleskipper17 nimbleskipper17 Member
34 messages
joined Mar 2005
#11 ·
They had me on that regimen for years when I was just a kid; it was always shifting around, sometimes twice a week, then maybe three, they’d tweak the dosages constantly... there was even a period where I was getting two different shots—or whatever the technical term is—at the exact same time, one in each arm. I don't know, I was just a little thing back then, all I know is it was part of my life from as far back as I can remember until I turned nine. Meanwhile, my asthma was just getting worse—attacks were getting more intense, more frequent—and honestly, it felt like a total waste of time. When I hit nine, we moved to the coast (specifically to deal with my breathing issues) and since making that move, I haven't needed any treatment at all and haven't had a single issue.

I assume things have probably evolved over the last twenty years or so, but that's just my personal experience. Apparently, it actually works for some people, though I've yet to meet anyone like that 😉 In any case, please, for heaven's sake, talk to a doctor before you change anything regarding your treatment plan.

And BTW, what's the word? Is it hyposensitization (not hyper-)? Or are we talking about two entirely different things here... 🙂
coastalowl80 coastalowl80 Newcomer
7 messages
joined Jul 2006
#12 ·
nimbleskipper17 said:They had me on this for years when I was just a kid; various combinations, twice a week, sometimes three times, they’d tweak the doses, and at one point I was even getting two different shots at once (one in each arm), so... I don't know, I was little, I just know it lasted from as far back as I can remember until I was nine. Meanwhile, my asthma just kept getting worse—the attacks were stronger and more frequent. It felt completely useless. When I turned nine, we moved to the coast (specifically because of my condition), and since then, I haven't needed any treatment or had any issues at all.

I assume things have changed over the last 20 years, but that’s just my experience. Apparently, it helps some people, though I've yet to meet anyone like that. 😉 In any case, please consult with a doctor before making any changes to your treatment, obviously.

And BTW isn't it called hyposensitization (not hyper-)? Or are we talking about two different things altogether? 🙂

I'm such an idiot, I don't know how I could have written something so stupid; it's definitely hypo. 😵 😵 😵
I stopped taking advice from doctors a long time ago. Maybe it isn't the smartest move, but when you spend your whole life being fed nonsense—things you know don't just fail to help, but actually make you feel three times worse—well, maybe you don't have much of a choice. Anyway, as long as I can handle things on my own and see that my methods actually work, I'm not going to settle for some tenth different therapy just because someone with a degree says so.
velvetwolf92 velvetwolf92 Member
42 messages
joined Apr 2007
#13 ·
I used it myself for about ten years, I guess. It actually helped me quite a bit. I was dealing with what felt like chronic bronchitis, or some variation of that—it wasn't really like having sudden attacks, more like this constant, lingering state where I just couldn't catch my breath properly. You know, you're breathing, but it feels like you can't get enough air in, and then my chest would start stabbing me every single time I took a breath. My stamina was basically non-existent; I’d have to stop several times just to climb twenty stairs, and whenever I was walking through the city with friends, I’d always find myself telling them they needed to slow down...

But, honestly, I don't think it's a great idea to stay on something like that for such a long stretch. Every medication is a double-edged sword; it might fix one thing, but it'll probably mess something else up.

If you aren't seeing any actual improvement, I'd say just quit. That’s what I would do, anyway. There's no point in just struggling along if you aren't feeling better. Maybe try looking into homeopathy or something similar??

Best of luck with everything!
redcrane6 redcrane6 Member
11 messages
joined Oct 2006
#14 ·
coastalowl80 said:I honestly feel like an idiot—I have no idea how I could have written something so mindless. Of course, hypo is still 😵 😵 😵
I stopped taking advice from doctors ages ago. Maybe that’s not the smartest move—fine, call me reckless—but when you spend your entire life being lectured about nonsense terms that don't just fail to help, but actually make things three times worse because they won't listen to how you *actually* feel? Then you kind of run out of options. At the end of the day, as long as I'm managing this on my own and seeing that my methods actually work, I'm not going to cave and try some tenth random therapy just because someone with a fancy degree tells me to.

Check out the specialized clinic over at the Boston University Medical Center. They have exactly what you're looking for.
It's a new peptide-based medication with immunomodulatory effects, and supposedly zero side effects.
Word is it becomes available this October, but only at three specific clinics in Canada.
I'm already prepping for that treatment; a friend gave me the scoop (he's actually receiving it at the clinic), and he says it's fantastic and really easy to handle.
I'm getting ready to head out there to get all the specifics.👍
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#15 ·
coastalowl80 said:I stopped taking advice from doctors a long time ago. Maybe that isn't the smartest move, but when you spend your entire life being fed garbage—terms and treatments you know don't just fail to help, but actually make things three times worse because they won't listen to how you're feeling—then you really don't have much of a choice. Anyway, as long as I'm on my own, I can manage, and I see that my methods actually work. I'm not going to settle for some tenth useless therapy just because someone with a diploma tells me to.

It always surprises me to see that even today, with such effective asthma medications available, people are still opting for hyposensitization... which is honestly unnecessary.
Go to one of the pulmonary clinics in Washington, D.C., and consult with specialists there about an optimal treatment plan. In most cases nowadays, asthma isn't an issue if you use the right inhalers... hyposensitization only makes sense if you're seeing a private practitioner (and that benefits them, not you). They get to charge you a fortune for every single visit and the allergen supplies, so at least someone is happy with the outcome. 🙄
coastalowl80 coastalowl80 Newcomer
7 messages
joined Jul 2006
#16 ·
granitebadger25 said:It always surprises me how people still opt for immunotherapy when we have such effective asthma medications available today... there really isn't a need for it anymore.
You should check out one of the pulmonary clinics in Washington, D.C., and talk to specialists about the best therapy for you. Nowadays, most asthma cases are easily managed with inhalers. Immunotherapy only seems worth it if you're seeing a private specialist—which benefits their bottom line more than yours, since they charge for every visit and every allergen kit. At least someone ends up happy with the results. 🙄

Look, granitebadger25, I don't have anything to do with private clinics. I go to the silver coin hospital, and honestly, I don't think I could find a better facility in this region.
Asthma meds aren't a one-time thing; you use them for life. Since most of them rely on corticosteroids and other expensive ingredients, I wouldn't question their effectiveness.
As for the allergens, I don't buy them through the hospital. They have to be custom-made specifically based on your own diagnosis. You can get them through the hospital, but it's much more expensive that way.
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#17 ·
coastalowl80 said:granitebadger25, I have nothing to do with private clinics. I go to the Mayo Clinic, and honestly, I don't think you could find a better hospital in this entire region.
Asthma medications aren't just something you take once or twice; you use them for your entire life. Given that most of them are corticosteroid-based or other expensive little luxuries, questioning their efficacy is simply pointless right now.
I don't buy my allergy testing through the hospital; those have to be specially cultured and formulated specifically for your diagnosis. You can get them through the hospital, but they charge you even more for it.

coastalowl80, believe me, I know exactly what asthma is and how it should be treated.

Immunotherapy actually had some justification back when corticosteroid sprays didn't exist, and even then, it was only for single-allergen allergies. Today, however, it is nothing more than unnecessary harassment of patients.

Inhaled corticosteroids are the foundation of asthma management—or rather, keeping asthma under control. It pains me to hear that at a place like the Mayo Clinic, they are still scaring children and parents with them. Yes, like any medication, they can have side effects, but those side effects are incomparable to the consequences of untreated or poorly managed asthma. Furthermore, they are far milder than the risks associated with immunotherapy, which can (rarely) trigger anaphylactic shock.

I am old enough to remember what asthma looked like before the advent of corticosteroid sprays compared to today... nowadays, hospitalizations due to asthma are a rarity. There was a time when almost every asthmatic was hospitalized at least once a year due to acute attacks (even with immunotherapy being available back then).

You stated yourself that you have been struggling with immunotherapy for two years and see zero results... enough said.
I don't know how old you are, but if you haven't hit puberty yet, there is a chance your asthma might settle down on its own during that stage (though symptoms often resurface sometime after age 20). If you are past puberty and still having these issues, it will be permanent and won't be resolved or controlled by immunotherapy. In that case, my advice is simple: change your treatment plan (and your doctor). 😉
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#18 ·
coastalowl80 said:Asthma medication isn't just something you take once or twice; you have to use it for your entire life...

Exactly. They are lifelong medications. Asthma is a chronic inflammatory condition, so it stands to reason that management is a permanent requirement. It’s the same logic applied to diabetes—I don't think anyone with diabetes is shocked when they realize they need insulin for the rest of their lives.

I am not sure how much you actually understand about your own condition, but chronic illnesses cannot be "cured." They can, however, be managed through medication and lifestyle choices so that you can live a perfectly normal, high-quality life.
If someone has convinced you that immunotherapy is a permanent cure for asthma and allergies, then you are clearly misinformed about the nature of your disease.
coastalowl80 coastalowl80 Newcomer
7 messages
joined Jul 2006
#19 ·
granitebadger25 said:coastalowl80, believe me, I know exactly what asthma is and how it should be managed.

Immunotherapy actually had some merit back before corticosteroid inhalers were available—and even then, only for single-allergen cases. Nowadays? It’s just unnecessary torture for the patient.

Inhaled corticosteroids are the backbone of asthma management (or rather, keeping it under control), and it breaks my heart to hear that at a place like a local Mayo Clinic, they’re still scaring kids and parents with them. Sure, like any medication, they can have side effects, but those risks pale in comparison to the dangers of untreated asthma. Plus, they're far less risky than immunotherapy, which can occasionally trigger anaphylactic shock.

I'm old enough to remember what asthma was like before steroid sprays became standard. These days, hospitalizations are rare. Back then, it felt like almost every asthmatic ended up in the ER at least once a year due to severe attacks, despite immunotherapy being an option even then.

You mentioned you've been struggling with immunotherapy for two years without seeing any results... isn't that enough evidence for you?
I don't know your age, but if you haven't hit puberty yet, there's a chance your symptoms might settle down temporarily during that transition (though they often resurface in your 20s). If you're past puberty and still struggling, this is likely permanent and won't be fixed by immunotherapy. In that case, my advice is simple: change your treatment plan and find a new doctor. 😉

Look, I believe you when you say you know what asthma is. I wasn't explaining medications just to educate you; I was simply providing context. But please, trust me when I say that claims like "immunotherapy will cure asthma" are not just nonsensical—they're ridiculous. Allergens are triggers for allergic asthma, and immunotherapy is used when a specific allergy is severe enough to cause spasms. And yes, you have to be extremely careful with it.
As for the meds, I agree they impact quality of life and help manage symptoms, even if the side effects are minor. But I can't speak objectively when I personally feel better without them. At the hospital, they aren't scaring kids with these inhalers; quite the opposite. They hand them out like candy, which is exactly what bothers me. For years, they wouldn't even admit they contained steroids, claiming there were no side effects.
I'm 17, and my asthma actually got worse during puberty. I'm stopping the immunotherapy; it just doesn't make sense anymore.
My goal isn't to argue or bash doctors and medicine. I'm just sharing my own experience and my own perspective. It may not be the absolute truth, but based on what I'm going through, it's what I believe.
Best,
redcrane6 redcrane6 Member
11 messages
joined Oct 2006
#20 ·
coastalowl80 said:I have allergic asthma.
I’m wondering if any of you have experience with this, if you know anything more about it, or what you would recommend?

From what I’ve gathered, a handful of people dealing with severe asthma and allergies to basically everything living were part of a clinical trial for a new drug over at the University of California Medical Center in Chicago. I’ve been trying to get my hands on it myself—but honestly, there's zero chance until the end of September. I am absolutely certain—and I mean, mark my words, absolutely CERTAIN—that ENKORTEN is the ONLY thing that can help. They've been testing it there, and starting in September, it should be added to their asthma treatment list.
Try to find a way to contact the head of the clinic, Dr. Hasan Žutić, or maybe the chief physician Pećanac, to see how this new medication actually works. From what I understand, it targets the immune system by boosting immunity—which is the key—and most importantly, it's easy on the body. It supposedly has no side effects, which is exactly what I need because those corticosteroids are absolutely destroying me.
It looks like they are developing it in collaboration with the USA and Germany.
For more info, you should look into the Mayo Clinic (specifically the pulmonary department at the University of California Medical Center).
On the Pfizer website, there's just a mention that they are currently in Phase III clinical trials for asthma, and it seems like they are coordinating the research—though I don't have all the granular details.
That also means we're nearing the finish line. The only potential catch is that the drug is administered via subcutaneous injection three times a week during the initial phase (so, you really have to be physically present there at the start).
Also, I'm not sure if you're an adult, because being of legal age is usually one of the requirements for these things.
We really need to see if they publish the Phase II results involving those 60 asthma patients on their website; that data is going to be crucial.
I hope I've pointed you in the right direction.🙂 :klap:

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