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Has anyone done sublingual immunotheray (SLIT) or the injection style (SCIT)? Did it make you feel terrible/set of your asthma symptoms?

SmilesForMiles profile image
7 Replies

Hey all,

I started SLIT (grass+ragweed) in November of 2022. I was feeling find before I started it (just on my asthma control medication + no symptoms/sleeping well able to go about my life), but since I've started taking it have found it sets off my asthma (mildly, so I'm taking more rescue inhaler) and makes me pretty fatigued.

Obviously I'm taking small amounts of a substance I'm allergic to, so that's going to cause some reaction. The reaction was kind of worse when I started and then seemed to be going down (which I think was a good thing).

Unfortunately, my inlaws visiting for two weeks over Christmas seems to have precipitated an asthma attack (just lots of coughing, shortness of breath, sleep disruption...not what you need when hosting 5 people in your house + 1 dog lol). The attack seems to be resolving (thankfully without prednisone) since they left, but I'm still coughing and took some time off work (no fevers, runny nose etc and PEFs dipped a little so definitely asthma).

My respirologist doesn't seem to have a lot of faith in immunotherapy, though it is recommended for skin test positive asthmatics by the asthma association in my country, so I'm kind of having doubts and wondering if it's worth giving myself symptoms during months where I would otherwise feel perfectly fine.

Has anyone tried SLIT or SCIT and how did it go? Did it make you feel poorly? Were there improvements the following spring? Did you have to be careful about stress levels?

I also do a lot of trail running (I'm pretty competitive haha), so I'd love to know how you did the following spring in terms of planning my racing schedule. Unfortunately a lot of my key qualifiers are in early June which is peak grass pollen season.... I managed one race last year, but I couldn't train at all really and my chest was pretty darn tight throughout :(

Thanks!

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hilary39 profile image
hilary39

I'm glad you asked this because I am very curious about this same question. I am American and in the states we do allergy shots so I did those from age 8 to 18 with great results but then I stopped them and my allergic asthma deteriorated over the next several years to the point that it was significantly, significantly worse.

It's most likely because my asthma just generally worsened as happens to many people with severe asthma but one doctor wondered if the shots had actually worsened my asthma by overexposing my immune system to the allergens.

After my asthma got a lot worse when I was 29, I looked into going on shots again but my doctors were worried it'd just aggravate my symptoms.

Then when I was 36 I moved to France where they do SLIT, too. My allergist here doesn't think it's particularly effective either and doesn't want me to try it.

But I still look back on the days when I could actually be around animals (when I was on shots) vs. today when just a bit of cat hair on someone's coat can send me into a flare for days and I have to admit I am keen to try immunotherapy once more...

Curious to hear what everyone else says!

How are you feeling now?

SmilesForMiles profile image
SmilesForMiles in reply tohilary39

Thanks for the reply and sorry for your experience, that sounds really frustrating. It's also just not something people think of, that they have a bit of cat hair on a coat and it'll set off an allergic reaction.

Hmm yea, I know there is some hesitancy around treating severe/poorly controlled asthma with SLIT/SCIT as well because it increases the risk of anaphylaxis. 10 years seems like a long duration of treatment too, most of the studies look at 3-5 years, so maybe that's what the one doctor was referencing?

I'm still kind of flared up, but I think it's improving, I was able to do about 50% of my planned runs yesterday at least and got some work done.

I guess the other thing for me too is that I wasn't on year round asthma therapy last spring, so hopefully being on inhalers consistently for a few months before spring hits will help my airways be less reactive, because last year they did nothing and I ended up taking a bunch of prednisone... which even then I didn't feel great

Have you talked to your respirologist about biologics? If you're more severe that could also be an option. We're basically waiting to see how this spring goes and if I fail everything I'm currently doing, that will be the next step...

good luck and take care

hilary39 profile image
hilary39 in reply toSmilesForMiles

Yep! I was on Xolair for three years. My doctor tried me on Dupixent last month and I am having a terrible reaction to it (ugh!) so hopefully going back on Xolair next month. It helped me for sure. I was on pred a lot less frequently with the Xolair.

So glad you're getting some of your planned runs done!!

AxKlein89 profile image
AxKlein89

I'm in my third year of SLIT (allergic to dust mites) and I can sincerely say that it cured my asthma. Sure, I do get very mild symptoms now and then, but they are that: very mild. You do have to be very patient, though, because SLIT only really starts to take effect after ten months or even a year. It was after this period, indeed, that I was able to get off my meds.

I hope my own experience helps people here. Happy new year to everyone!

SmilesForMiles profile image
SmilesForMiles in reply toAxKlein89

Ok thanks for sharing, that gives me some hope!

Patience is not my strong suit for sure hahah but good to know to keep at it for at least a year before making any decisions.

My allergist's handout says I should notice some difference after six months, so I'm hoping a combination of being on regular controller inhaler, blexten (antihistamine), and nasal sprays/rinses will make things more manageable!

Homely2 profile image
Homely2Administrator

A number of years ago, I did the occasional mountain marathon. If I wasn't well and unable to run, I trained by sea swimming. It is obviously not the correct way to train for running, but it keeps you away from pollen etc. I found that it maintained fitness, but did not improve it.

Sea swimming creates much more resistance than pool swimming, especially when it is windy.

SmilesForMiles profile image
SmilesForMiles in reply toHomely2

I don't have the sea by where we live but maybe lake running could be an idea for avoiding pollen and getting outside. To at least maintain fitness and break up indoor training would be good

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