Anyone with asthma had this ?

[tootyfruitypickle]

Just posting here for traffic in case anyone can help

DD (13) has had mild asthma for a few years well controlled by a low dose preventative inhaler.

During the hot weather in July it flared up very badly during sports week and has never got better . She was put on a new inhaler but after a month of worsening symptoms, headaches and heart racing I persuaded the GP to change it and now she s on seretide. She was on 50 and seemed better for about 3 weeks but then got covid. She's now had two months of nightly breathlessness and 'aching' heart also sometimes racing . She's had her seretide raised to 125. She's been taking montelukast since the summer.

We do have a referral now but I'm worried . Also with the heart sensations worried about taking her for her first vaccine?

Tonight I gave her a dose of gaviscon in case the heart aching is indigestion, it did seem to calm then got bad again so I do t think it's that as surely that wouldn't cause heart racing in addition?. I can't find anything that relates asthma to it. And I can't understand why the inhaler isn't working it's so much stronger than what she was on just 6 months ago.

Does anyone have any ideas what could be going on?

I am going to buy a peak flow meter and start a diary with her in the new year of measurements and her symptoms am and pm (much worse in the evenings but not overnight ).

Tia

Yes, I am asthmatic, and my breathing was very bad after I had covid. The effects lasted for a couple of months - lots of coughing and wheezing and generally struggling to breathe. I took Montelukast for a few weeks and it seems to be back to normal now.

I went to a talk by an asthma and allergy research specialist. There are links between asthma, Covid, Long Covid and the mast cells. In fact they are using asthma medication (steroids) to treat some people with Covid in hospital. When the mast cells are activated, it affects the autonomic nervous system, which is also known as dysautonomia. This causes chest pain and palpitations. A known trigger for the mast cells is heat, which might explain why your DD had a flare in the summer. Try antihistamines. I see your DD is already taking Montelukast which is also used to settle the mast cells. It might be worth asking your specialist about it though.

@BonnesVacances thank you I had thought about antihistamine as she had an dairy allergy until quite recently (2 years ago). She doesn't really eat dairy now - just chocolate. I have suggested we drop chocolate for a couple of weeks when she's got through her Xmas stash to see if it helps. Or dust - but her room is quite dusty and she's ok overnight. Will start her on it after Xmas and see if it helps

Thanks so much for all the responses I told dd as well and she went to sleep feeling calmer as well. She just seemed to have so many symptoms and it's quite scary for her with the heart symptoms of course

I really hope that all of you with ongoing symptoms post covid find they settle soon. Just so awful, fatigue is talked about. It not being able to breath comfortably is very stressful xxx

About 4 years ago my asthma gradually began to worsen. My prescription was changed and I was given Fostair. About 2 months after starting Fostair I began to development odd symptoms - palpitations, a tiny little gasp for breath which somehow felt connected to my heart and body tremors that made me feel very ill. Initially I didn't connect the symptoms with my asthma medicine, I'd been fasting to lose weight and thought I'd messed up my blood sugar levels. I had a heart scan, wore a heart monitor for a few days and it turned out that an ingredient in the Fostair was causing my problems. My prescription was changed to a Relvar Ellipta and I've been fine since and not experienced those symptoms again.

Yes I'm hoping they will change her medication as well as I don't think seretide is working for her . The GP and asthma nurse just seemed at a loss-so definitely want to see a specialist. We're seeing a paediatrician but not a consultant, but if it's someone specialist that would be good. And there's this other London paediatric asthma specialist I'm trying to get her into. Just not keen on her taking such a high dose of medications that aren't even working as she's no better on 125 dosage than she was on 50 seretide.

Montelukast did definitely help a bit at first so that's worth continuing with.

The dose of seretide she is on is in the ‘moderate’ dose category, also bear in mind that if her technique isn’t good she’ll be getting a lot less than prescribed. She needs better management and investigations so
I can see why you’ve asked for a referral. However, with no hospital admissions/ daily steroids etc I think it’s unlikely she’ll meet the criteria for a very specialist service.

No suggestions I'm afraid but I have been told that practices are not allowed to do spirometry and breathing tests due to covid risk. Not sure if that is everywhere but may be worth knowing

Aching heart thing: I found when I had covid and for a long time after I had an ache right under my breast bone. Horrible. The GP suspected inflamed airways and put me on antibiotics.

The other time I've felt something similar it was, I think, acid reflux caused by hypothyroidism. I've seen quite a few comments about covid exacerbating hypothyroidism so if your DD has it might be worth getting her levels checked.

Sorry you're going through this and hope she feels better soon

Hello @tootyfruitypickle
Im asthmatic. She needs a good asthma practice to manage it.
Lots of Vit D, look at the research papers.
Accupuncture was super for me.
You also need to get the proper set of allergy tests done- skin prick- this will narrow down if she is allergic to anything, most likely dust mites. A dusty room is not good. I assume weekly bed strip and wash, freezer for pillows and allergy covers are already being done?

Just saw all these useful replies thank you !

She's had antihistamine the last 3 nights and it's made her so so much better. Still a little bit breathless but it doesn't worry her as not nearly so bad and her heart issues and evening cough have completely stopped with it . It's cetirizine and I've read about side effects (also I took it for 3 days once and was insanely depressed ), so I'm going to switch her to Claritin I think, if that works will ask about a prescription for that generic antihistamine.

What's the science behind this - is it just that she is reacting allergically to something ? It began in July so could be pollen but surely not now?

Hopefully quite useful info to take to the hospital appt when re assessing her treatment plan .

@Janeandjohnny no I need to get on top of her room (it's not terrible, just usual teenage stuff everywhere so hard to dust but I'm going to start prioritising it in the chores), planning to sort it and air it properly this week, she's been tested when little for dust allergy and it wasn't positive though. She's much worse in the evening pre bed and doesn't hang out in her room during the day so it seems unlikely though?

If she doesn’t already use one then get her a spacer as they help get more of the medication into the lungs. You can buy small ones which will fit in a school bag.

You might also want to have a chat with a nurse at asthma uk? www.asthma.org.uk/

@CactusFlowers yes she has one but a small travel one sounds a good plan. I'll call Asthma Uk next week definitely, they sound great .

@tootyfruitypickle

Just saw all these useful replies thank you !

She's had antihistamine the last 3 nights and it's made her so so much better. Still a little bit breathless but it doesn't worry her as not nearly so bad and her heart issues and evening cough have completely stopped with it . It's cetirizine and I've read about side effects (also I took it for 3 days once and was insanely depressed ), so I'm going to switch her to Claritin I think, if that works will ask about a prescription for that generic antihistamine.

What's the science behind this - is it just that she is reacting allergically to something ? It began in July so could be pollen but surely not now?

Hopefully quite useful info to take to the hospital appt when re assessing her treatment plan .

Loratadine is another antihistamine that works in the same way as Cetirizine.

The science is that when your body detects an allergen, the mast cells release mediators. Histamine is one of them. Leukrotine is another and that's the one linked to asthma and which Montelukast treats. There are other mediators too such as tryptase.

Sometimes the allergens are real, ie pollen, dust. Other times the mast cells might overreact to something innocuous like a fragrance, or a food and release mediators for no reason. This is when it called Mast cell activation disorder (MCAS). Sometimes the mast cells might react to an allergen but then not settle and the symptoms continue even when the allergen has been removed. This is linked with dysfunction of the autonomic nervous system known as dysautonomia.

Both dysautonomia and MCAS are rife at the moment as they are triggered by viruses and are known underlying mechanisms in long Covid. Unfortunately neither is well understood in the NHS and are dismissed by GPs and people have to go to private specialists for help.

But it sounds like antihistamines have helped anyway.

This may be totally out of the box but I have asthma and take a nasal spray for my allergies as well. My asthma nurse said that the 2 often interact and studies have shown if you have both and don’t take the nasal spray/antihistamine it can seriously worsen your asthma which was interest as I have found I need to control both. It’s only the over the counter nasal spray but hay fever could have made your DD worse.
Also there is nothing wrong with pushing for a full heart check up (sorry if you already have) my friend had slight heart muscle damage after Covid and it was supported with medication and they said it often returns to normal after 6 months but she is much older. Just chucking this in in case.

@BonnesVacances thank you so much I'm wondering if pollen set it off , it never really got better, but then covid made everything flare again as it definitely got worse after. I'm hoping maybe a week of AH could knock it on the head for a while but we'll see.

@ilovebagpuss thank you yes I was thinking about a nasal spray , definitely worth a shot !

I had what they thought was covid in March 2020. Before testing was available outside hospital.

My asthma fell off a cliff. I had extreme breathlessness so much I couldn't climb stairs for months without struggling.

My heart would pound and I could only sleep with the window open. After a lot of medication changes I'm now stable on Montelucast, seritide 250, spireva and fexodenadine. This was the only combination that stopped the breathlessness.

I went from fit, walking miles and doing 4 hours gardening to sitting in the sofa.

It's never been confirmed that I had covid. I assumed it was a flu like cold at the time but I wasn't too I'll and it passed quickly. The aftermath was the difficult bit.
Non of the 4 children got ill. Looking back it's likely it was covid.

Definitely do peak flow. Start a diary and do it morning and evening, before ventolin and after. This will be very useful to whoever is assessing your daughter.
The asthma nurse should give one along with your spacer.