Mannitol challenge... No reaction

[Chip_y2kuk]

Hi all,

I had a mannitol challenge but didn't have a reaction, had anyone else had this?...everyone is convinced I'm asthmatic but it's just a bit of a kick that I didn't react at all

[Lysistrata Administrator Community Ambassador]

What did you do before/get told about med stopping? A lot of places including specialist ones are crap with instructions for it especially if you take montelukast which needs to be 4 days for mannitol - it inhibits the pathways mannitol provokes.

I had a negative histamine challenge in 2012 probably due to the meds issue (still had a lot of reversibility at the end). A confirmed brittle asthmatic I met there also had a negative one at same time and had had positive one before - not even sure why they were doing one on her but she felt it was meds. Then I had a strongly positive mannitol challenge 2 years ago. I had to look up the meds stopping schedule myself though and it was really hard for a few days - I got told oh 24 hours for everything will be fine which isn't true. And this was a specialist asthma clinic!!!

[Chip_y2kuk in reply to Lysistrata]

I don't take montelukast but think they may have been a day out on the fexofenadine they said 2 days but I've read somewhere it's 3 days

But it's a bit of a kick to be told the results of this test don't indicate asthma... I've been told I'm asthmatic for as long as I've been alive

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

According to Papworth who are specialists and who helpfully publish a guide to the mannitol challenge, which I used:

3 days for fexofenadine

3 days for Spiriva

24 hours for ICS plus long-acting beta agonists (so Seretide, Symbicort etc etc

24 hours for theophylline

8 hours for Ventolin

The test gets called the gold standard but that depends a lot on the meds being stopped. It's also an 'indirect' challenge test ie it depends on the asthma being triggered via specific pathways. The histamine and methacholine challenges are 'direct' ie they directly trigger sensitive airways. Because I'm clearly special (not in a good way) I managed to have a negative direct one and a positive indirect one - if anything it should have been the other way round! I do know the feeling of ugh are they going to just tell me it's not asthma now and where do I go from here?

Are you due to see cons soon? May be worth reading up on when the test is negative, and maybe calling AUK nurses. I did all the reading on negative tests before mine as I was so sure it would be negative and was surprised by the result - but I did learn that it's not the be all and end all despite what some people insist.

[Chip_y2kuk in reply to Lysistrata]

Yeah I did call AUK and spoke to One of their amazing nurses.. I also read online somewhere that it's a out 50-60% accurate and gives false negatives 40-50% of the time

It's still a kick when I was struggling after stopping fexofenadine, tioptropium and duoresp i was so sure it would plummet (my pf fell by 70L/min before even getting there) ... and then it didn't drop

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

I think some people put way too much faith in it! How long did you stop the Spiriva for, as if not 3 days that may have contributed, even if it was long enough to feel crap with?

Yeah it's really rubbish to struggle after stopping the meds - which does suggest they are doing something - then have a negative result. I hope AUK were helpful re what next/how to approach it with cons.

[Chip_y2kuk in reply to Lysistrata]

Yeah a bit crap my pulse rate was 110 the day before the test... my pulse rises when my asthma/whatever it is is giving me grief... doctors always find it fascinating that my pulse is in triple figures and I'm resting

Yeah AUk said that it would be "a brave man, that stopped someone with your medical history's, asthma medication based on one test especially as you are typical of an asthma sufferer"... so I think I will discuss it with the consultant in a few weeks time

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Oh mine too with the HR! Some of them get it and some just blame it on the salb which is infuriating as I know it's more the asthma and if that gets treated it will drop! It seems like the HR response to asthma isn't so well known unfortunately.

Hope it all goes well - the joys of being an atypical asthmatic...

[Chip_y2kuk in reply to Lysistrata]

I've never had a doctor yet that understood the hr.. the first time I went to urgent care they sent me go a and e because they thought I had a blood clot (apparently heavy bloke, high hr, and cough = blood clot)

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Ohh the PE! I get suspected of that loads especially when HR is still high hours after one neb because they didn't believe it was asthma so didn't give me anything else. I get that they have to be careful as they can be fatal, but I loathe it because sometimes I get unnecessarily irradiated for a scan, and once they find I don't have a clot, they tend to just say well you're fine you can go home. Instead of, well you're still struggling so maybe we can try treating the asthma? Which IMO would be less risky as a first time strategy than a scan, especially since the d-dimer blood test will pick up if you cut your finger last week pretty much.

I have met the odd dr who gets that my HR is asthma-related but I can't rely on it. I did once or twice freak them out with 170-180 for a while - 'coincidentally' among my worst attacks, but some of them were still trying to say it was the salbutamol despite a dodgy blood gas. I did have a lot of nebs yes, but it was still higher than other times I have had a lot of nebs. I find that if I move or cough during an attack it will shoot up and set the monitor alarm off which to me rather suggests it is asthma related.

[elanaoali]

I had a negative test too.I was 4 days without my inhaler nexthaler fostair 200/6, monkelaust and anti histamine. However my consultant told me that they don't really know how long it takes for steroid inhaler to leave the body. So his conclusion was that even with breathing tests too being negative my asthma is very well controlled. Not going to stop my medication or alter it in any way.

So please don't worry I was sure mine was negative at the time too. Had the same doubts til I spoke to asthma UK helpline too. I been much worse for the last 2.5 years but my doctors, asthma nurses and consultant have looked after me well.

[Chip_y2kuk in reply to elanaoali]

The consultant did say that my spiromotery showed some obstruction/restriction

And as I said to lysistrata I'd started to struggle a bit before the test but... got right through it without any sort of reaction

[Kjm83]

I’m still waiting for my results, now 15 weeks after test! But she did say at the time it didn’t move enough. Been to gp since and he says I’m clearly still asthmatic with all the problems I’m having. It’s apparently only 60% accurate and false negatives are possible