Has anyone had immunotherapy shots for dust allergies?

[Thatone5]

Has anyone had immunotherapy shots for dust allergies?
Like injections of small doses of it over a period of time to desensitise the immune system to it?

If so, did it work? Did you have to pay for it? Any info would be helpful.

I’ve had dust allergies for nearly 2 decades now and finding it horrible wheezing, itchy eyes, puffy face, lack of sleep etc. Dust is a very hard one to completely eliminate in terms of exposure as even if I clean my bedroom, hotel rooms are awful for it and moving furniture etc becomes impossible.

I really want a cure rather than a cover-up.

Thank you

@Thatone5

Yes! I was very very lucky to get it on the NHS after I ended up taking the max dose allowable of fexofenadine plus still taking over the counter anti-histamines.

I was utterly miserable. As you say you get zero relief! My asthma was constantly triggered. My sinuses were inflamed 24/7 (that was the worst part of it constant headache every day). My lips and eyes swelled up and I applied allergy cream like a moisturiser. I was on cortisteroid nasal sprays. Nothing helped. I had to get a job working outside, as I couldn't work anywhere enclosed with carpets or rubbish air conditioning. I ended up carrying an epipen for reassurance in case my throat swelled up.

I couldn't walk into a bookshop, a library or any clothing/carpet/charity/furniture store without being triggered and my throat feeling like it was closing up. I couldn't sleep in my bed even with anti-dustmite covers on. I couldn't sleep in hotel rooms with carpets. I couldn't open my wardrobe without sneezing. I couldn't accept offers for sleepovers or visits with friends without having to think about what their house was like as I couldnt manage the environment. In fact I didn't sleep over.

I went on holiday to New York and it was hell in the hotel room which was carpeted even along the walls. I hadn't thought about the room beforehand, my reaction was so bad I had to spend the first day looking for a pharmacist for some extra meds.

I had to beg my doctor to consider recommending me as it was taking over my life. When I went for the consultation they measure me and said 'oh most people have some dust mite allergy and your skin prick test indicates a reaction but not a severe reaction' I had to tell them exactly in detail how it was affecting my life in every way. After that they green lighted me. So note. The skin prick test doesn't always correlate with how severely your immune system is over reaction in terms of effects.

Thankfully, it has worked for me. It didn't start working till end of 2nd year though. Note it does not get rid of it completely, it is not a 'cure' and they say it will only last a certain amount of years. But it calms down the response. I still can't tolerate carpets or dusty places for too long. Travelling on the Tube will still leave me really stuffy. My bed is still a bit of a problem, but I alternate between the sofa (which is a sort of faux leather) and the bed. But I have a life and only take otc meds occasionally now. I can also shop without being triggered (yay) as clothes shopping had become hell. I am also back to being a housework slattern!

It is worth pushing hard for. I say do it! Dust mite allergy is so overlooked in comparison to peanut (obviously peanut allergy can kill you) but when it becomes really aggressive you have zero life, because it is 24/7 whereas with other allergies you can often limit your exposure.

Tell your doctor every way it is affecting you, because it is true most people have DM allergy but it is a nuisance rather than a real problem so a doctor may not understand that when it becomes very bad it takes over your life!

And I hope this helps. I know the misery. PM if you want to ask any questions.

@CatherineOfAragonsPomegranate thanks so much and for inboxing me. I’ll see how I get on with the GP after lockdown etc.
How frequent and what kind of dose of immunotherapy did you have? Do you know how much it would have cost you if you went private?

& are the effects expected to be permanent?

It's a real committment as you start off getting a jab every 3 weeks or so (it could have been every week, then every 2 then every 3 then every 6 I don't remember the first weeks) then it becomes more stretched out to every 6 weeks. You have to be available at the same time on the designated day the clinic runs, so if runs on a Wednesday between 12 and 3pm you have to be available every 6 weeks (sometimes I went after 8 weeks) for Wednesday at that time. This means having to tell your employer you will be unavailable at that time.

It took 3 years before my therapy finished. At times it was rough because my body reacted aggressively to the shot then I'd have to go in for another one.

I was told the effect is not permanent, but it lasts for a certain amount of years. I don't know why, as I didn't get to talk to a senior consultant before I left. And as I said, they told me it doesn't mean I won't need to still take antihistamine at times. Just not so terribly and in the mega doses I was taking before.

The nurse said she hopes she never sees me again. By that I took it that it doesnt always work for some people and they end up on therapy again.

I'm just happy to have some relief.

I don't know how much it would have cost to go private. I really would have considered it though, had I not been approved. I'm thinking, being as the later shots are quite spread out maybe it would actually be managable.

I'm also highly allergic (as in swelling face etc) to cats but they refused me for that as its seen as avoidable hazard. I would consider getting that privately if I had spare cash.

What meds are you taking to deal with it at the mo?

Thanks for all that detail. Shame it’s not a permanent cure for everyone.

I occasionally take antihistamines but I don’t like to as it’s a temporary plaster over the symptom (not a root cure) and ventolin inhalers for the wheezing.