Do they offer allergen desensitization shots in the UK? In the US, my MD would get a specific formulation for specific proteins like polle-specific antigens, derp1 etc, and give it as a shot. I would spend 30 min in the waiting area and leave. In the USA, this therapy is much more common than Xolair, and has been around for ages. In the USA, "designer" healthcare like Xolair is a privilege of the rich (or the lucky ones who have posh insurance... I had one thankfully). Thus, most people get "allergy shots" to control their allergies, in addition to steroids etc. , since it's cheap and well-established.
In the UK, "allergy shots" were never mentioned to me, which is strange, as one would think NHS is always broke and likes to save money. I mentioned allergy shots to several GPs and consultants here, and their reaction was as if they did not know what I was talking about.
A clinic in London has mentioned to me that they do desensitization but administer the allergen orally, not as a shot. They did not initially offer this as a cheaper alternative to Xolair, and were happy to administer Xolair straight away ($1500 a month).
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I had a 3month course of desensitizing jabs many years ago, about the late 1970s or early 1980s. It helped greatly at the time although I still got infections which clogged up my lungs.The great change for me was when I retired in1997, although I was elected as a metropolitan district councillor in 1998,it didn't affect me like working did. I stood down from that in 2008 due the onset of paroxysmal atrial fibrillation.
My asthma is well controlled by preventer inhalers (Duoresp Spiromax 320/9), and the lockdowns and self enforced lockdowns, and possibly the Astra Zeneca Oxford jab, have prevented me from getting colds and subsequent chest infections which lead to asthma.
Thomas, do you happen to remember what specifically they were desensitizing against? Was it oral or via shots? In the USA, they literally would mix 5-10 different allergens (whatever I was tested positive to with 4+). Allergens were also state-specific, i.e. you would have to speical-order "CA allergens" in VA. At least the UK has a "uniform" climate.
Crazy idea: I should get the dustiest pillow off ebay, grind it up, and make morning smoothies
It might be they do not like doling it in the UK due to the logistics of administration, and the rest of the argument can be twisted this or that way. GPs and consultants want you out of their office in 10 min with an inhaler prescription in hand (the UK system), whereas having the "allergy shot" nurse on staff at all times, and having people sitting in the lobby for 30 min after the shots were administered can be only afforded when money is thrown at it (the US system). The downside that the poor in the US cannot even get basic inhalers
I had a series of injections, and had to sit in the waiting room afterwards. Tests showed I was allergic to house dust mites, cats and human hair ( I double checked that). The injection worked.
Interesting that they only did it for 3 months. Sounds very much like what I had in the US, it's the "default" thing to do there. I will pester my consultant about this.
Desensitization to allergies is done in some specialist allergy clinics (NHS) but I expect it's only done for the most severe allergies, but in cases where the allergy itself is the issue. It may not necessarily be asthma related because of course asthma and allergy are two very separate issues, some overlap of course but one affecting the other isn't a given thing. Not everyone's asthma is triggered by allergies after all and I know of people who very definitely have both asthma and hayfever but as separate issues that don't interact with each other.
It may well be cheaper than biological asthma treatments, I have no idea, but it will be a case of the treatment being the right one rather than giving something because it's cheaper. With asthma, something like Xolair isn't just "for allergy", it's how the asthma is as a result of the allergy - so for example, one's allergy might not be that bad looked at on its own (i.e. it's not causing huge anaphylactic reactions left, right and centre) but the impact on their asthma means they need something like Xolair - more expensive perhaps than desensitization but the right treatment for them.
Twinkly has acknowledged that there is overlap, and if you have allergic asthma of course they are closely intertwined, though still not the same thing. However, she's correct that they aren't necessarily always connected and the intertwining isn't a given thing. It is entirely possible to have asthma, even severe asthma, which is not driven by classical allergic mechanisms and does not have allergic triggers. There is probably a larger body of research currently on allergic asthma, and increasingly on eosinophilic asthma which can certainly be linked to, but is also not the same thing as, allergic asthma. Medical science and clinicians probably do know less about non-allergic, non-eosinophilic asthma currently.
There are people with severe hayfever and/or allergies who don't have asthma (and I know they are often genetically linked, but it still doesn't mean everyone will have all allergic conditions together). There are people who have allergic triggers which trigger asthma but don't cause anaphylaxis (or even milder allergic reactions eg mild-moderate hives). And I'm one of those people who has hayfever that doesn't seem to affect my asthma. It's possible that some degree of postnasal drip from hayfever might affect my asthma, but the pollen itself does not.
(I admit that seems odd - I thought it was odd too, but I looked at the literature and there are definitely other cases of atopy occurring alongside non-allergic asthma. While I probably can't separate them entirely because they both occur in the same body and therefore might affect each other, it doesn't mean the conditions themselves are always linked.)
Lysistrata -- I agree that everyone's case is different, and this is why on this forum different folks found that different inhalers, dosages etc work for their specific cases, often by trial and error. These options were available, and mentioned to them. The desensitization route, on the other hand, was not mentioned to me as an option, despite the fact that I have had a history of anaphylaxis and currently have to take extreme measures to avoid one specific airborne allergen. In addition, what starts out earlier in life as hayfever may evolve into asthma and anaphylaxis later in life, e.g. following a viral pneumonia (my case), and might now become more prevalent with "late covid."
To me, the argument seems to boil down to "we do it here our way, and other countries do it their way", yet I doubt populations in different countries have fundamentally different mechanisms of immune diseases. The US system has numerous flaws, too, in terms of the inaccessibility of healthcare to the ones who have no insurance.
I have asthma.......but it is nothing to do with any allergies! Not for me. My triggers are respiratory infections, cold temperatures (and damp?) and indoor air pollution! And I have been told my eosinophil count is very low - I believe a high one is a sign of allergies.
In the uk allergy desensitisation (AD) isn’t really considered that helpful for mild-moderate (or even the lower end of severe) allergies. The only places I know/people I know who have had it in recent years (now that more drugs are available) are the extreme anaphylaxis style allergies (ie the ‘someone opens a bag of nuts a mile away and it triggers anaphylaxis’ level of allergy), and the key is to get them tolerating it in that sense (ie so they can sit on a plane and be ok even if someone else on there has a bag of nuts).
Equally if the did AD for anyone with a more mild allergy in the uk would be very expensive. Needing Xolair is rare, but all and sundry have hayfever…
Xolair also works on the asthma side of things, not just on the allergy aspect. So it will provide long term relief to your lungs as a maintenance drug, thus avoiding the need for steroids (and all the ‘fun’ long term side effects they can bring), rather than just specific allergy avoidance and most allergic asthmatics have multiple allergies anyway and each one would need a different AD therapy…
So basically if you have multiple ‘mild’ allergies (ie not instant anaphylaxis) that trigger asthma attacks a lot the route they will go is asthma control. If you have 1 life-threatening allergen which does not trigger asthma the route they will go is AD.
>>>most allergic asthmatics have multiple allergies anyway
Emma, yes, but some allergies are more debilitating than others. A plant that blooms 1 month a year and which can be avoided for the time being by staying indoors is one thing. In contrast, dust mite allergy, prevents me from being in any "normal" office which have carpets, sleeping in any "normal" bedroom, and being in any "normal" UK apartment (most of them have carpets... cheaper than hardwood). For an office-type worker like myself, that's 24 hrs of day of non-stop exposure which one cannot avoid w/o taking extreme measures (I have covered all carpets in my office and home with 2mm plastic sheeting).
But the Xolair will help with this allergy as well as control your asthma better. As well as the other allergies that you have. And if it’s not an anaphylactic reaction to the dust mites then the NHS won’t do desensitisation. I have some bad allergies (including dust allergy) which trigger my asthma off (I usually say that life triggers me cause I also have a lot of non-allergic triggers), which were helped a lot of Xolair when I was on it (I switched to Mepo then benra due to having both eosinophilic and allergic asthma and my eos seemed to be the greater issue). Currently I have benra and a load of antihistamines (with extra for specific triggers) and will possibly get dupilumab for both types of my asthma when it becomes available.
What symptoms do you get from dustmites? Equally do you do any small exposure to them? I usually find if I completely 100% avoid a moderate allergy for a bit then stumble across it my reaction is a lot worse, whereas it I ‘allow’ small exposure to it my body has less extreme reactions in the long run. Ie I go from angiodema and urticaria and severe asthma attack reactions with a sudden exposure to more ‘hayfever’ style reactions (itchy, mildly puffy, moderate asthma attacks) if I go from a no exposure base to a little exposure base (I hope that makes sense 😅)
But if you want to go AD privately and have found someone who will do it then go for it. I was more explaining why the NHS functions like it does and will go for an allergic asthma treatment rather than an allergy treatment for something like this.
>>>What symptoms do you get from dustmites? Equally do you do any small exposure to them? I usually find if I completely 100% avoid a moderate allergy for a bit then stumble across it my reaction is a lot worse, whereas it I ‘allow’ small exposure to it my body has less extreme reactions in the long run.
>>>
Emma, in my case it's the opposite: when I let my body take a 100% break for months... years, I do not get severe reactions any longer, and it takes persistent re-exposure to get them again. My understanding is that I cannot "train my body" by exposing myself to allergens via the IgE route. Somehow, the shots active the "IgG" route (or so I was told), and the IgG outcompete the IgE, when available.
I agree that Xolair is supposed to be "magic" (and it was in my case), but my baseline of 940 on the PF (and 650 when I feel sick) makes my consultant believe that I will have a difficulty convincing the NHS that I must have Xolair, even though I have been in self-isolation in a clean air tent for the last 2 months, not being able to work. Hence I am looking for alternatives. If the shots are much cheaper than Xolair when administered privately, I might go that route instead.
The idea of licking dust off carpets does not sound that crazy, actually
My allergic symptoms when entering a dusty room (or a library/book store) are the regular asthma stuff -- difficulty breathing, chest tightness, "bubble" in the lungs, can't exhale air, etc. I do not go to book stores or libraries for that reason.
So from the sounds of it it’s an asthma trigger rather than a ‘genuine’ anaphylactic style allergy (allergy symptoms being; itchiness, runny nose, itchy eyes, rashes, hives, skin swelling, throat swelling, cough, wheeze, shortness of breath escalating to anaphylaxis/anaphylactoid reactions involving blood pressure drops etc). The sensation you have described sounds like my sort of asthma reaction rather than what I class as my allergy reaction. Which would also be why you tend to find 0 exposure better than mild exposure - long absence allows the built up ‘inflammation’ to calm down and has a slow build up when returned to the trigger, whereas for less extreme allergies exposure allows the ‘adaptation’ to make you slightly more functional when exposed. When you go like this what works best for you - antihistamines or your reliever inhaler?
For example if I contact cats I use both, but things don’t calm properly (ie my hives and angiodema and other symptoms) until the antihistamine has kicked in the inhaler is solely for the asthma symptoms that come into affect, whereas for me personally if I go into a dusty room my asthma will trigger off and it’s the inhaler that does the most work (unless I stay in there too long and my allergy symptoms then kick off. At which point my body is in ‘allergy’ rather than ‘asthma’ mode so to say). Both with long term exposure will build up to more and more asthma AND allergy, but it’s a completely different presentation and feeling. (And look… red watering eyes, ‘kylie Jenner’ lips and a snotty nose, verses normal face 😅)
I’ve always been told that when it’s an asthma trigger it’s the asthma that needs focus on controlling and treating, whereas if it's allergy you need to focus on treating allergic reaction (eg with antihistamines)
I’m lucky as I don’t have any ‘life threatening’ allergies as most of my issues have been treated by antihistamines and steroids without needing adrenaline or hospitalisation (have had hosp for hydrocortisone for allergy once or twice), whereas my asthma is uncontrolled, which causes problems but at least I don’t have to stress to the same point as the really allergy when eating out etc (my only food allergy is egg, which is now more of a food intolerance and asthma trigger 😅). But that being said I have a lot of asthma triggers, some (like dust animal dander and hayfever) being from my ‘allergic’ side (so can land me in hosp frequently if I don’t treat as needed), others (like bleach and scents etc) being from my eos side (which do the same 😅).
But the ‘presentation’ of your dust mite allergy would suggest an asthma control issue triggered by allergy, rather than a classic allergy issue (the only thing the nhs with do AD for). Bu as I said if you found someone private who will do it and think that it will help you go for it
Whilst asthma allergy (and eczema/rhinitis and sinusitis 😉) are related they don’t necessarily come together as one. You can have asthma without allergy and allergy without asthma, you can have allergy triggers for your asthma which in the short term don’t trigger off an allergy! (See above 😉) hopefully you’ll find something that works for you, and MAB approval is usually done on trips to hosp/courses of steroids needed as well as official asthma diagnosis and the ‘right’ number of IgE (for Xolair). They shouldn’t decided access on PF alone (but might look at variability)
Whilst asthma, allergy (and eczema/rhinitis and sinusitis 😉) are related they don’t necessarily come together as one. You can have asthma without allergy and allergy without asthma, you can have allergy triggers for your asthma which in the short term don’t trigger off an allergy! (See above 😉) hopefully you’ll find something that works for you, and MAB approval is usually done on trips to hosp/courses of steroids needed as well as official asthma diagnosis and the ‘right’ number of IgE (for Xolair). They shouldn’t decided access on PF alone (but might look at variability).
Hope this clears up some of the confusion on this thread, cause a lot of people mix up allergy and allergic asthma or use it interchangeably 😅
Oh. Meant to add, NHS wise AD comes after referral and appts with allergy clinic (separate to asthma clinics/resp clinic), so if you’re finding you can’t cope with the allergens at home you could ask for an allergy clinic referral!
My highly "scientific" theory is that asthma is like getting rash and hives on the lungs, instead of the skin.
BTW... when my asthma is really bad, and AE is nowhere to be seen, I take an epipen shot. Works like a charm.
The consultant did acknowledge variability, high IgE, Eos, asthma attacks, prior diagnosis, prior Xolair, and literally mentioned "you tick all the boxes". Then he says "but your lung function is normal". Normal for those who were lucky to be born with regular size lungs, yes. Not normal for someone with a baseline FEV1 of 150%.
Ugh. Yeah. I hit that road block too with the LFT (my best is 144% so getting under 80% meant having to do it whilst in a bad flare, which lost my reliability cause my lungs were ‘twitchy’. Got there eventually but it did involve purposely triggering a severe-LT asthma attack, doing LFT then going to a&e to get one 🙈.
Epi works because it is very similar to adrenaline which is a treatment for acute asthma. I have a friend who is allergic and asthmatic to a stupid degree (tubed 50+ times and ecmo’d 8+ times in the last 2 years), who can have very brittle drops, and she’s been told ‘if it’s a really brittle drop, call ambo, take epi, neb and hopefully ambo will be there before you’re unconscious, take 2nd epi if longer than 10mins, and take 50mg hydroC shot too’ (she can go from ‘fine’ to intubated within 20 mins). But she’s also told if she ever needs to use epi for any reason she has to hosp even if she’s fixed.
Hopefully the LFT situ will get sorted to help with access 🤞🏻
No. I had one planned but decided to trigger myself off at home 😅. Long exposure to allergy triggers, plus a ‘run’ around the hospital grounds just before the spiro, with no Ventolin. Went from 144% spiro the month before, to 50% with ‘obvious asthma curve’ and a physiologist refusing to do a methacholine test just reversibility and then being sent down to a&e 😅😂. That being said I have had a histamine challenge test (at a different hospital) that ‘proved’ asthma too. It really wasn’t too bad. Very slow and controlled and not that scary. Tho it probs helps that I’m an underperceiver… the ‘80%/big enough drop so asthma shown’ I only scored 0.5-1 on the BORG scale of breathlessness (at my worst I was in resus fortnightly, and living at 50% PF at home so…)
As has already been said, it does no longer seem to be a standard treatment here in the U.K.Years ago when I was first diagnosed with Hayfever, I was told immunotherapy was not suitable for me as I had too many allergies - I would be like a pin cushion with no real improvement.
Recently I had blood tests for allergy at the respiratory clinic. IgE came back as high, but not all allergens were identified. The consultant said there was no point in continuing with repeated blood test to identify the culprits, he just increased the antihistamines I am taking.
This is an interesting one! I can remember these things being done, say, back in the fifties and sixties, but I believe were stopped as occasionally there could be a catastrophic allergic reaction. In other words, after much enthusiasm they were regarded as unsafe. As far as I understand it it has come back, but with far more care and caution due to the above history. Our adult daughter who is allergic to cats, but also is quite obsessed with them, was once lucky enough to get a referral to one of the specialist clinics. She is atopic, with a history of various, occasionally weird, symptoms as a child. She was hoping for desensitisation against cats. But as she is atopic they did decide it wouldn't work - another allergy would likely just become more of a nuisance. So it was a non starter.
I have many allergies diagnosed by both private physicians and ones with in the NHS. The NHS used under the skin injections for diagnosis. Some have used RAST blood tests (speciaist Dr. at St. Barthlomews). Almost impossible to obtain treatment under the NHS, but it is possible to pay privately for immunotherapy or a type of EPD (Enzyme Potentiated Immunotherapy). Some doctors providing this privately belong to the British Society for Ecological Medicine. Years ago I tried with my GPs support to get funding from the CCG but was turned down and ended up funding for a course of EPD. My son has successfully been given a course of immunotherapy, paid for privately, for dust mite allergy. I am considering following his example to deal with some of my pollen allergies which segue into grass allergy from spring through summer.
There is an excellent book on allergies called 'The Allergy Bible' by Professor Brostoff and Linda Gamlin.
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