asthma never controlled no matter what

[BrittanyOk]

Hey there!

Long story short but not so short- never had lung issues of any kind all my life but at age 32 i got a bronchitis in early 2019 and basically its parting gift was irreversible airway obstruction- aka copd but ive never smoked or been around any smoke and no pollution- no chemical filled job. So, my doctors labeled me asthma.no alpha one gene defiency and ct scan was clear. However- to their shock i passed the methocholine test twice & my feno was only 10. No allergies. No high eosinophils- consistently low normal and my ige is only 2! So they cant say for sure asthma. Yet daily its like i always have crappy breathing. The word “obstructed” is best to describe the sensation in my airways. I do wheeze from what i can feel but its not audible. And i have mucus production. My daily inhalers work to open me up for like an hour but i react or feel short of breath all the time! Its NUTS. I do nebulizers around the clock- have been for 5 years. And breztri is my preventative. So, clearly im the weirdest case out there. Nobody knows what to do with me. They (doctors) try to act like im making it up but i clearly have a low fev1/fvc consistently on my Pulm function tests and theyve also heard how awful i sound and get when i have a respiratory illness.

is anyone like me ? Thanks for reading.

[Particle32]

I seem somewhat similar to this. I have no eosinophilia but still seem to show consistent obstruction. I kept having chest infections and have sinus issues and needing steroids. Things have improved since I started carbocisteine. No chest infections since January. Never smoked etc. Regular, difficult exercise has helped too. I'm 42.

[BrittanyOk in reply to Particle32]

Hey There, sorry to hear youre dealing with this. When and how did it start? Also have you done an IGE or methocholine challenge?

[Particle32 in reply to BrittanyOk]

I haven't done the challenge. I have done a few IGE's both of which I think were 1. My FENO was very low too. I'm not due spirometry again till later in the year. But I imagine FEV1/FVC will still be below 0.7. It was 0.6 last time. My FEV1% was 83 I think.

I feel like things have improved after an exacerbation last year when I was first diagnosed with asthma and in hospital. No shortness of breath now and I don't need the blue inhaler. On the fostair.

I think they're working on the basis of asthma but they will do a reversibility test and more next time I have spirometry.

I've also had a CT which didn't show bronchiectasis or emphysema.

Sounds quite similar but I don't need nebulisers. And while I have had issues with mucus, outside a chest infection, it tends to be my sinuses and throat rather than lungs.

[djbctla]

Ask to see an ENT and they may do a Colonoscopy to see have u reflux, causing mucus production. BERNARDINE xx

[Patk1]

Take a look on aluk website,at controlled breathing technique.its one to practise,with pursed lips,and helps whn walking,exercising and when struggling with breathing as it helps u to relax,reducing anxiety.have they looked at Yr voice box,vocal chords - mine close literally to a pinhole but the technique does open them - it's vcd= vocal chord dysfunction/ ilo= inducible laryngeal obstruction.sounds like Yr Airways are hyper sensitive.have they tried a different steroid inhaler - that 1 doesn't sound to b helping x

[Itswonderful in reply to Patk1]

Hi. What's aluk please?

[Poobah in reply to Itswonderful]

Asthma &Lung UK website.

[DannyQ]

Hi Brittany, I've had pretty much control of my Asthma for most of my life but I've been struggling with exercise until the last month when they tried me on Montelukast and wow what a game changer for me, I'm not saying it would work for you but maybe it's worth discussing with your asthma nurse because the change in me is hard to describe

[grasslover89b in reply to DannyQ]

I tried Montelukast and it done nothing for me at all, so I stopped using it. I was on it for 5 months.

[DannyQ in reply to grasslover89b]

I find it strange how we're all so different and how certain things like Montelukast worked for me but not yourself, I suppose we all have to keep trying until we find what works for each of us

[grasslover89b in reply to DannyQ]

Yes after several months I just gave up on it....so I keep trying as you say

[DannyQ in reply to grasslover89b]

You will find what works for you, you sometimes have to be persistent with your asthma nurse to try different things, depending on your nurse as I currently have a really good one but I've had ones in the past that don't really care, well that's how they made me feel

[runcyclexcski in reply to grasslover89b]

>>>Yes after several months I just gave up on it....so I keep trying as you say

Montelucast never does anything for me, but I keep taking it to please my doctors. Otherwise they say I am being difficult/trying to think too much for them.

[Sk00by]

I don’t know if you’ve been tested for dust mite allergies, but I had terrible breathing and asthma issues for over a year until I was diagnosed as severe. Once I was diagnosed I got rid of all carpets in my house and had wooden floors fitted. My breathing is now back to normal.

I got my diagnosis by a blood test at a respiratory clinic.

[runcyclexcski]

Do oral steroids help (if temporarily)?

[DollyDutchGirl in reply to runcyclexcski]

Usually a 5 -7 day course of steroids can knock a troublesome issue on the head. However, sometimes, a longer course is necessary.

[runcyclexcski in reply to DollyDutchGirl]

How long does the recovery after the steroid course last and what precipitates the next round?

[DollyDutchGirl in reply to runcyclexcski]

Once the infection has been cleared, folk are usually good to go. However, if’s not cleared, then another visit to your GP/ asthma nurse will necessary to check you over and, if needed, prescribe a second dose - all depends on how bad the initial infection was. Hope that helps.

[PW_R]

hi, I’m 39 and a severe dose of bronchitis in the spring of 2022 left me with chronic bronchitis (funnily enough without obstruction in my case) but high symptomatic, with a lot of mucus. I’m currently trying to get over a recent exacerbation which has been super severe & lead to hospital for 4 nights. The consultant (not mine regularly) said bronchial asthma but it’s clearly chronic bronchitis, I smoked since early teens & only stopped at 33, after getting whooping cough! There’s a lot of stuff on the long covid section of Reddit that might be interesting. Everyone over there tends to be younger so feels a little more relatable sometimes

[Oldandgray]

I read a post on my GERD Facebook post who had to have an operation on the little flap that stops food getting into the airways, can’t remember what it’s called, but their symptoms had a similarity to yours.