mannitol challenge test

[sciencepotato]

has anyone had mannitol challenge test an didn't need to stop montelukast? Was your test positive (you had your asthma confirmed)?

[Yumz199725]

I haven't heard of that test but I do remember the medication I was on it for a while before I started getting a rash on my neck and having bad dreams and as soon as they found out that it was stopped straight away x hope your asthma is stable??

[sciencepotato in reply to Yumz199725]

Oh no!

It's a diagnostic test for asthma / checking inflammation in the lungs by inhaling mannitol and doing a breathing test or spirometry. I'm dreading it because you're supposed to stop your oral meds 3 days prior and inhalers 24h prior to the test.

[Chip_y2kuk]

I had to stop everything at set times.. and one of them was montelukast, fexofenadine, spiriva and at the time I was on duoresp spiromax too.

I didn't react in the end to the test so they got me in for a methacoline test,or it might have been the other way round... but I didn't react to either challenge response test

Good luck

[sciencepotato in reply to Chip_y2kuk]

Btw how did they interprete the lack of the response in your case? No asthma?

[Chip_y2kuk in reply to sciencepotato]

I'm afraid it's been interpreted as everything from not asthma to heart failure.... however I got referred to the severe asthma clinic about 18 months ago and on my first appointment they said the dreaded words "all those tests you've had over the years, I think we are going to need to do them all again" .... so they started booking tests and I started turning up for them

In my second appointment I got the head honcho who said I think I know what you have but I want to do some more tests to confirm it... so I got more letters for more tests and he was right .... they confirmed large airway collapse (Excessive Dynamic Airway collapse) with a dynamic ct and a dynamic xray... and suspect that mixed with some form of mucus producing asthma subtype .... "mucus asthma phenotype" it says in one of the letters

The severe team have also said that I do have asthma as my spirometry over a long period of time shows "too much variance" also my feno until recently has also been high.... so I have asthma just not the "normal" presentation of it

[Patk1 in reply to Chip_y2kuk]

I've >90% edac + tbm on normal breathing,affecting both large and peripheral Airways.how r they treating it x

[Chip_y2kuk in reply to Patk1]

They told me they don't really treat it in the UK but "symptom management"

[Patk1 in reply to Chip_y2kuk]

I was already on niv which helps,as does bronchodilaters and respiratory physio told me the aerobika also forces thm open - but imo when closed to pt of struggle to even breathe I'd not b able to blow it x

[Chip_y2kuk in reply to Patk1]

Yeah, I'm on fostair 200

Spiriva respimat

Carbocistine

Fexofenadine

Azythromycin 3 days a week

6% saline twice a day through a nebuliser

I've had respiratory physio and also have an aerobika

The aerobika takes a bit of getting used too, but i had flu last Christmas and was really struggling so I was practically attached to it... it got sick quick and needed antibiotics and steroids but I also got well pretty quick and cleared the crap off my chest (thanks to physio techniques and the aerobika) ... better than the Mrs (mild asthmatic)

[sciencepotato in reply to Chip_y2kuk]

thank you so much, I've learned a lot from your asthma history and symptoms. I feel like there are still alternative explanations to my symptoms that involve asthma and I shouldn't despair to keep looking for answers. I'll wait for what current consultant will find out with the investigations but if she still can't help then I'll find another specialist who will hopefully be interested in my case.

I'll try and give an update when I get my challenge test done.

[sciencepotato in reply to Chip_y2kuk]

Hi! How are you doing?

I've just had a mannitol challenge test myself and didn't react either 🤣🙈

So I hope they won't stop believing I have asthma 🙈

[Chip_y2kuk in reply to sciencepotato]

I'm good, how are you?

There are a few different irritants, I also had methacoline challenge at a different time.... if the doctor rules out asthma because of one test they aren't good doctors (although it is supposed to be used to help confirm a diagnosis)

[sciencepotato in reply to Chip_y2kuk]

oh I've been ill every month since September 🤣. Not sure, I may have been on 7 courses of various abx. Had two course of steroids and the incorrect weaning nearly caused adrenal insufficiency. So it's a lot of fun! My asthma is worse during infections. But apparently my mannitol is negative! Although when I got back home after the test, I coughed and wheezed and the chest was so tight

[sciencepotato in reply to sciencepotato]

I'm starting to believe that unless we're with asthma exacerbation no test will determine our asthma issue 🙈

[Chip_y2kuk in reply to sciencepotato]

Yes in 8 years I've had so many theories everything from I'm imagining it to heart failure

[sciencepotato in reply to Chip_y2kuk]

I can imagine. They were sort of trying to put me forward for biologics and decided I should do mannitol first (not sure why, perhaps to make my case stronger?) but now that it's negative I guess my case is too weak. I'll update you when I know more about this

[sciencepotato in reply to Chip_y2kuk]

I can imagine. I think it's very very hard to find a good experienced lung consultant who knows more about asthma than a quick Google search!

[Chip_y2kuk in reply to sciencepotato]

I had a sore/tight chest after the mannitol/methacoline

[sciencepotato in reply to Chip_y2kuk]

Haha yes I look forward to speaking with a doc. Although it'll be a random one for a while as mine is on maternity leave. Which is not too bad as she was utterly unhelpful.

[sciencepotato]

oh no that's exactly what I'm afraid of - that I wouldn't react to the test and they stop believing I have (severe) asthma...

What was the purpose of that test in your case? Did you deteriorate badly when you stop your meds?

[Chip_y2kuk in reply to sciencepotato]

To prove I had asthma was the aim of the tests

As for stopping everything it wasn't pleasant I did start to get breathless and developed a cough... they where getting worse but then I had the tests and started everything again

[sciencepotato in reply to Chip_y2kuk]

Oh God, how many years / months did it take the to finally figure out what's wrong? What symptoms did you have??

My primary concern is that after taking Spiriva my peak flow doesn't drop much so even my consultant is thinking everything is probably ok but I know it's not true. Anyways she wants to confirm it's actually asthma hence the mannitol test. I'm under severe asthma clinic too. When I have symptoms only steroids or 12 puffs of Symbicort seem to help. My peak flow is normally 530-550 and drops to 450-500 before I start to feel severe pain in chest from tightness in the chest resolvable with inhalers.

Basically I'm worried I'm not going to show that my condition is severe enough to take me seriously and give me something else apart from many courses of prednisolone a year. They are effective just not for long. Until hayfever season starts or my son brings infections home.

[Chip_y2kuk in reply to sciencepotato]

My main symptoms where breathlessness and pretty intense coughing (I can cough so hard I can practically pass out) I also got recurring chest infections

My peak flow doesn't really drop and if it does its normally at about 450 (from 580-590) and it really hurts... normally at that point I've got a pretty nasty infection.

I'm in my 8th year, in that time I've had

5 Ct scans

So many xrays

3-4 echocardiograms

3 full lung function tests

So many blood tests

Enough spirometry

Tons of Feno tests

A pulmonary cardio test (hooked up to I don't know what on an exercise bike)

4 respiratory referrals

1 severe respiratory referral

An endocrinology referral

And an immunology referral

Lots of courses of prednisolone aren't good for you, I was having 6+ a year and kept complaining until it was finally heard and my gp sent me back to the respiratory specialist who said "we did everything we could for you last time we are going to need to refere you to tertiary care, the severe asthma clinic" .... that was the best thing that has happened in the last 8 years (that was about 18 months ago)

[sciencepotato in reply to Chip_y2kuk]

Oh my, I'm so sorry but in the end you got to the bottom of this!!

Well so far it's been almost a year under severe asthma clinic for me and they did one spirometry which was normal (obviously it was after prednisolone) and wanted to get me in for mannitol but then cancelled because I was breastfeeding. Now I'm still breastfeeding but somehow they are still going to go ahead with it (?!). So basically nothing happened. Apart from two more prednisolone courses which they advised to take only if peak flow drops to 400. But like you I don't have a major drop and it really hurts when it's at 450 with wheeze across chest and infection. But they said it's too high for putting me forward for anything serous like biologics so they need more tests like mannitol. And I'm just not hopeful I'll react. Especially because they said don't have to stop montelukast for it. I think noone will be wiser at the end of this... I had ct spirometries pulmonary exercise test over the years too. And nothing definitive to confirm asthma. Only in a different country when it was still impossible to get spirometry in the UK due to covid they said it's asthma and gave me fostair. That's how I started to breathe ok again. They only saw a 6% improvement after salbutamol and my peak flow was within ok still but they said I reacted hence it's asthma. Here they wouldn't even give me salbutamol test when spirometry is OK.

[shazier2000 in reply to Chip_y2kuk]

Sorry Iv never heard of tertiary care

Bless you please take care and I hope you get some more answers and help

[sciencepotato in reply to Chip_y2kuk]

I'm similar to you but no cough normally just tight chest and short of breath, can't inhale. All that helps are either steroids or montelukast.

How did they explain why your peak flow doesn't drop much? Considering you do have asthma and they confirmed that?

If you are having a chest infection, how do you manage to get steroids from the doc given that there's not so much of a drop in your peak flow? Thankfully I have a good gp who believes me but she keeps saying how bad pred is and I just can't not have it

[Chip_y2kuk in reply to sciencepotato]

Because its a "mucus asthma phenotype" .... the theory is that my airways fill with mucus instead of the "normal" airways constricting

Plus the EDAC means my airways are quite literrally weaker than a paper bag so it doesn't take much to get them to collapse ... breathing out does it .... so any decent inflammation and the larger airways narrow to a mm of being closed

The problem with mucus asthma and airway collapse is that stuff can get in but normally you would cough to clear... however when I cough my airways collapse and the stuff gets "more stuck" causing more coughing ..... and it normally ends up in a nasty infection

[sciencepotato in reply to Chip_y2kuk]

That actually sounds like me :

The problem with mucus asthma and airway collapse is that stuff can get in but normally you would cough to clear... however when I cough my airways collapse and the stuff gets "more stuck" causing more coughing ..... and it normally ends up in a nasty infection

How did you check for mucus phenotype? I think I should bring it up at my next review!!

[sciencepotato in reply to Chip_y2kuk]

And most importantly: what treatment are you getting now?

[Chip_y2kuk in reply to sciencepotato]

I'm on fostair 200Spiriva respimat

Azythromycin 3 days a week

Carbocistine

Fexofenadine

And I nebulise Hypertonic saline (6%) twice a day (am and pm)

I was also taking montelukast but stopped when I started seeing the severe asthma team (at my request)

If I'm OK over the winter I want to take less fostair (I'm currently on the highest dose with permission to take an extra 2 puffs in a pinch)

Have you ever had feno done? What was it? (Under 15 is normal)

At the minute I'm at a record of 5 months without a chest infection... it used to be 3 months and the average dropped to 2 months in the colder months between them.

[sciencepotato in reply to Chip_y2kuk]

It must have been so awful for you to go on without diagnosis for so long... I know it only too well

What did they change in your treatment when you finally had been diagnosed? Also, what do you think the reason for your steady peak flow despite asthma, why do you think it doesn't drop much unless in a really bad infection?

My Feno was 16 last time they checked, said the norm was 25 or something...

[Chip_y2kuk in reply to sciencepotato]

It opened up treatment options.... the azythromycin being one, respiratory physio, the Hypertonic saline etc and these are all geared around fighting inflammation and helping get rid of any infection before it gets bad and making mucus thin and clearing it I don't think my peak flow drops much because I used to be able to hold my breathe underwater for 2-3mins while swimming 25 meters at a few meters deep so while I'm by no means fit now I'm in my 30's; when I was in my "teens" I most certainly wasn't in bad shape and I think being so "fit, respiratory wise" has done me favours and a great disservice at the same time; because like you my lung function is "normal" but my airways collapse.... and ive seen that with my own eyes so it can't be that "normal".

I don't wheeze very often and am normally in a bit of bother when I am wheezing. a lot of doctors have the "no wheeze, no problem,it's not asthma" attitude and its bloody awful

I've been told in urgent care there's nothing wrong with me because I'm not wheezing and 24-48 hours later I've ended up in a heap coughing in A and E because my left lung wasn't filling with air and they wouldn't let me leave (I spent 8 hours in a and e)

My respiratory team also have got my GP to provide me with a rescue pack of antibiotics and steroids for the "emergencies" where I can't be seen by GP or them and sods law is now I've got a steady supply of antibiotics and steroids at home I've not had an infection.... after getting one every few months for years (I think the azythromycin I've been taking since May is at least partly to thank for that)

Although they tell me taking azythromycin is "better" for me than taking copious amounts of steroids I'm not sure how much better being in permanent antibiotics is, but for now it's working.

[sciencepotato in reply to Chip_y2kuk]

Oh I see, what a quest they had to solve and how lucky that they eventually did solve it. I'm glad you've explained it in detail as I've learnt a lot from it too.

Just out of curiosity, do you remember your peak flow before they put you on spiriva?

My theory about my peak flow not dropping is that they put me on spiriva. Before Spiriva it was 400-450 and was dropping during covid or other infections to 350 or so. Never below 300 though.

What was the "proof" of asthma in the end? How long have you had it for? Did they ever mention considering biologics for you?

I'm also in my 30s, only got asthma in 2021 though. My theory is that it's because of high tree pollen plus moved into the house with cats and my bloods are showing I'm sensitive to their dander. Guess it all led to asthma in the end.

[Chip_y2kuk in reply to sciencepotato]

My peak flow did improve with spiriva 20-40 l/min ... but at that point I was already on stupidly high doses of combination inhaler that had made it improve too

The "proof" apparently is that someone has been through all of the spirometry and Feno tests I have had and its been recorded that there is "sufficient variance over a period of time to indicate asthma"

I was born asthmatic and diagnosed at 9 months old it went away in my late teens and came back with a vengeance 8 years ago

They have mentioned biologics there is one that they use for high esonophils ... im not eligible for that as my esonophils are always really low

There is another one that they use for high IGE (allergies) they have told me I would be eligible for that and depending on how winter goes when I go back in January that may be the next option as well as antibiotics every day

[sciencepotato in reply to Chip_y2kuk]

Isn't there a new biologic tezspire that isn't directed at allergies or eosinophils... Well it's great that you can qualify for something. I'm really glad there's hope that this all will get under control and you are already feeling better.

Actually, when you used to have recurrent prednisolone courses, how did you get them to prescribe if your peak flow was "fine"? It's just in my case they are looking at my peak flow at the severe asthma clinic and say that I should only have one in case my peak flow is really low like 400 and it's just never that low and they said biologics are unlikely with my peak flow that good during flare ups (450-500)... I guess if they prove to be unhelpful I might ask for a different consultant...

Also, I can't believe that the variability in your lung function tests was the "proof". Might as well just took your peak flow readings throughout the years!

[Chip_y2kuk in reply to sciencepotato]

The prednisolone was easy, I walked into my GP more than once with my left lung not filling with air and crackles/bubbling (I could feel it breathing in and out so there was no way they couldn't hear it) .... then they looked at all the stuff I was on and pretty much threw what they could get away with at me (antibiotics and steroids)

[sciencepotato in reply to Chip_y2kuk]

Btw did you ever ask your severe asthma clinic why you got a negative on the mannitol challenge test? Really interesting as to why people with asthma don't react on that challenge often. That test has a moderate sensitivity, so not idea at peaking stuff up really.

[Chip_y2kuk in reply to sciencepotato]

I didn't but I did ask AsthmaUK and they said that they trigger Asthma attacks in people with "certain types of asthma, they irritate your airways in specific ways" .... thats obviously not my issue (at certain points my spirometry went up during the test)

[sciencepotato in reply to Chip_y2kuk]

Also hats off for being so sporty in your teens, that takes some dedication. I'm sure it's helping your lungs great deal even today.

As for abx I wouldn't worry at the moment. Patients with bronchiectasis are taking more every day for life.

[Chip_y2kuk in reply to sciencepotato]

You can't really, they just believe that's what it is based on the mass amounts of tests I've had and the varying results... my feno has always been elevated, which indicates inflammation in the airways.

And the EDAC/Large Airway Collapse... normally comes with something else.... asthma and COPD being the common two they tell me and I don't have COPD as there's no evidence of fixed airway obstruction

[sciencepotato in reply to Chip_y2kuk]

I have to say that I feel worse breathing wise two days after the test than immediately before with no meds. It totally wrecked me. Peak flow 500 and doesn't go up to my normal 560 on my normal meds dose! Usually that doesn't happen at all.

[Chip_y2kuk in reply to sciencepotato]

That's not good, and it drives me mad that your drop is only 10-12 percent so you are technically still in the green zone ... but you notice that 10-12% drop and it isn't nice

I hope it returns to normal and you feel better soon.

[sciencepotato in reply to Chip_y2kuk]

Exactly. You know exactly what I'm talking about. Whereas nobody cares about small peak flow drops like this even with symptoms.

[Germantara]

Sorry can't help never heard off that take care

[ccccc]

Just to add my experience - I've had two mannitol challenge tests in the past 4 years and each time there has been almost no response, yet I have severe asthma. Peak flow never moves when I feel tight-chested/short of breath. Tried Xolair and it didn't work. Only thing that seems to is emergency Pred, despite the fact my consultant says it "can't be asthma" as my PF doesn't drop. I don't seem to be eligible for any other treatment. Only *you* know how you feel, I just tend to roll my eyes at consultants nowadays!

My theory is: I've been on Seretide for twenty years and have taken it every day without fail and I think my lungs have pockets of asthma in the small airways rather than the main ones. So the build up of medication and the main airways do the job during the challenge test. Try and explain that to a respiratory consultant who thinks they know everything...!

[sciencepotato in reply to ccccc]

that's exactly what I'm thinking too!! I think there's just no way forward for me without a consultant who does *not* think that asthma equals peak flow.

Are you allergic to anything?

[Chip_y2kuk in reply to sciencepotato]

That asthma = peak flow winds me upAlso wheeze = asthma is another

I normally proceed with "funny that my teams have told me that not everyone wheezes and mot everyone's peak flow drops until its quite advanced." ... and watch there reaction as they squirm there way out of it (most can't)

Advanced nurse practitioner's also get on my wick I've yet to meet a good one.

However my asthma nurse is amazing, but self confesses that she's never heard of EDAC and how that affects me and mixed with asthma .... but she listens, does what she says she will and doesn't fob me off.

[sciencepotato in reply to ccccc]

have they ever suggested trying you on tezspire? A new mab that isn't limited to eosinophilic asthma so should be for broader range of asthmatics?

[Chip_y2kuk in reply to sciencepotato]

They haven't specifically told me what biologics but I'm actually due to go back early February and I suspect that may be the next step(as we discussed it could be in october)

[sciencepotato in reply to Chip_y2kuk]

Oh I see! I thought you're well controlled on your saline nebs and antibiotics (forgot if you're taking them!)...

[Chip_y2kuk in reply to sciencepotato]

Yeah; mostly, but they wanted to see what happened over winter (it's normally not good) and I've had a few problems this winter ..... so it may be on the cards.

But it's certainly the best winter I've had in a long time

[sciencepotato in reply to Chip_y2kuk]

Ah I see. Glad you are doing better and fingers crossed they will keep it that way. Hope they will give you effective biologics! X