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Severe asthma - interested in what's worked for you


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#1 MooGuru

Posted 28 November 2019 - 08:50 PM

Have lots of drs and medications involved but asthma is not controlled.

Looking for some personal experiences re what's worked/hasn't worked for you.

*will obviously seek drs advice for any suggestions*

#2 ipsee

Posted 28 November 2019 - 09:10 PM

Getting fit is supposed to help.

And staying away from cigarette smoke.

Also you may need to avoid allergens like dust, mould, grasses, pet hair and sulfates ( this is a big one - it is the preservative in dried fruit, some fruit juice and wine).

Going back to basic serotide preventer helped me, after trying every trendy new thing under the sun (qvar, simbicort etc).

#3 smilinggirl

Posted 28 November 2019 - 09:14 PM

I went to the Drs today as a cold and the changing Melb weather means that I am wheezing and coughing 24/7. I had 4 hours sleep last night.

Your Dr should review you thoroughly and may make short- or long-term changes to your current treatment. These are just what my Dr has suggested for my situation.

So I have been put on Symbicort Rapihaler as both a preventer and reliever instead of having two different inhalers. Ventolin doesn’t work for me when I am having a crisis like now. I also was put on prednisolone and a nasal spay that is prescription only. Sometimes a different combo of meds will improve my asthma but each Dr has their preferred meds. Good luck and I hope you get it sorted. Uncontrolled asthma is both terrifying and exhausting with the effort involved to breathe in and out.

#4 PrincessPeach

Posted 28 November 2019 - 09:18 PM

Do you know what your triggers are?

There might be some creative ways of minimising exposure to them.

But other than that, my mum's is classed as severe & she is currently on a reasonably high dose of Symbicort. Once that no longer works, her last resort is a trial of Singulair (it's the only one she hasnt tried).

My little Mr is also asthmatic & our peadiatrician was explaining to us that he wont generally prescribe singulair as a first option for young children, but it is very effective for those with allergic trigger asthma & exercise induced asthma.

#5 Silverstreak

Posted 28 November 2019 - 09:26 PM

What I've found works for me.

Under the care of a respiratory specialist, not a GP.

Take a preventative medication every day.

Always carry a reliever.

Get my lung function regularly tested.

Also tested for common allergies like grass/pollen/dust mites, pet fur/dander.

#6 Fennel Salad

Posted 28 November 2019 - 09:28 PM

What triggers your asthma? Mine's cold air and exercise.

My asthma got pretty bad a couple of years back after having had influenza A. After a couple of 5 day courses of cortisone and I was much better with symbicort thereafter. Stopped taking it after a few months, went back to swimming and by and large, it's been ok since.

If you've tried oral cortisone, what are your options after that? ☹

#7 MooGuru

Posted 28 November 2019 - 10:06 PM

Thanks everyone - the general consensus seems to be we're running out of medication options so I'm hoping maybe there's something we've overlooked or that previously worked but we can't see the forest for the trees type thing.

Re fitness: I'd love to increase fitness but currently not possible. I do pilates regularly. Might see what else I can incorporate.

Triggers: I was good at avoiding allergens but currently everything and anything seems to be a trigger.

Meds: pp interesting re going back to seretide - I'll ask the drs about it. I haven't been on seretide for years.
Singulair hasn't worked for me in the past unfortunately.
Have already been on 50mg pred for months now.
Ooh actually I think I preferred the rapihaler to the turbohaler pp - I'll ask re switching back. I'd forgotten that. So thanks for reminding me.

Edited by MooGuru, 28 November 2019 - 11:09 PM.


#8 Silverstreak

Posted 29 November 2019 - 06:10 AM

Also you could ask to be tested for aspergillosis too, I was diagnosed with that a couple of years ago. It’s a sensitivity to a mould spore that asthmatics can develop and it’s not routinely tested for.

#9 too tired to care

Posted 29 November 2019 - 06:42 AM

View PostSilverstreak, on 29 November 2019 - 06:10 AM, said:

Also you could ask to be tested for aspergillosis too, I was diagnosed with that a couple of years ago. It’s a sensitivity to a mould spore that asthmatics can develop and it’s not routinely tested for.

I wasn't tested for this, but i lived in an old fibro house that had some damp and mould issues. I was getting really sick, with constant pneumonia. The specialist mentioned it could be the house, so we moved and I improved within 3 months. I have not had pneumonia since ( 3 years now) and my asthma is now under control with just singular and the occasional ventolin and flutiform when i am sick or when there is smoke around.

So getting tested and looking at your house for dampeness and mould might be a good idea.

#10 mandala

Posted 29 November 2019 - 07:43 AM

Not that my asthma is severe, but I've noticed an improvement since adding a nasal steroid spray. Sinusitis is increasingly being treated as an inflammatory condition like asthma is, and maybe reducing the overall level of inflammation in my body has helped. The kids' paed also recommended it for their mild asthma.

#11 amdirel

Posted 29 November 2019 - 07:56 AM

My DD has gone through so many preventers too. She is currently on singulair and Breo, which is a new inhaler I think.

#12 Smoo

Posted 29 November 2019 - 08:16 AM

in addition to his preventer DS also takes an antihistamine daily and we've gotten a dyson air filter (which seems to have also helped the non-asthmatics)

#13 born.a.girl

Posted 29 November 2019 - 09:09 AM

Have you considered having the treatment for allergies?

I was prepared to pay for our daughter to have it, (about $700 all up from memory), but the slacker missed a few appointments and would forget to take the medication so it all fell apart.

Because she'd taken about half, there was definitely some improvement, but because she didn't take the whole course, years later she's back where she started from.

Every grocery shop automatically includes tissues around her for her sneezing.

She's on Symbicort, and was on steroids for a few weeks for the first time in years, early in Spring (Melbourne).

#14 MooGuru

Posted 30 November 2019 - 07:55 AM

I don't think mould is an issue but will ask about asparagus as obviously I could be being optimistic on that front. (you know what I mean. It keeps autocorrecting and I'm too tired to fight it).
Ooh never heard of Breo - thanks for the suggestion.
I definitely don't have sinusitis - had a couple of cameras up the nose to check that out but thanks for suggesting it.

Born A Girl - I've done a couple of immunotherapy related things over the years - was your daughter doing a desensitisation (?) thing or something else? I vaguely remember the immunologist mentioning some injections for allergic asthma but deferring pursuing that option to the awful respiratory dr I was seeing at the time who was as useless as tits on a bull. Thanks for the prompt to ask again.

#15 ali-song

Posted 30 November 2019 - 08:12 AM

Have you had a trial of Xolair?

#16 MooGuru

Posted 30 November 2019 - 08:17 AM

Never heard of xolair - I'll ask.  Thanks :)

Thanks again everyone for the suggestions. I've got a respiratory review this week and feeling less disempowered just by having some questions/discussion topics ready.

#17 born.a.girl

Posted 30 November 2019 - 08:19 AM

View PostMooGuru, on 30 November 2019 - 07:55 AM, said:

I don't think mould is an issue but will ask about asparagus as obviously I could be being optimistic on that front. (you know what I mean. It keeps autocorrecting and I'm too tired to fight it).
Ooh never heard of Breo - thanks for the suggestion.
I definitely don't have sinusitis - had a couple of cameras up the nose to check that out but thanks for suggesting it.

Born A Girl - I've done a couple of immunotherapy related things over the years - was your daughter doing a desensitisation (?) thing or something else? I vaguely remember the immunologist mentioning some injections for allergic asthma but deferring pursuing that option to the awful respiratory dr I was seeing at the time who was as useless as tits on a bull. Thanks for the prompt to ask again.


Yes, it was the desensitisation thing.  I don't remember injections (although they don't bother her so that doesn't mean much) but more little liquid ampules that she was supposed to take on a regular basis.

I don't believe you're in melbourne, but if you are, happy to recommend the delightful respiratory specialist we both saw.

ETA: her allergies were not severe, and I think it was just the pollen one she was doing (which at the time were considered to be more effective than broader ones), but it was the 'load' he was trying to reduce come springtime.  Worked, too, for a while (would/should have worked permanently if she'd bothered to do the full course).

Edited by born.a.girl, 30 November 2019 - 08:21 AM.


#18 MooGuru

Posted 30 November 2019 - 08:43 AM

Thanks for clarifying. I think I've found a good respiratory dr now :)

Also pp who mentioned the air purifier I'm just looking at the sales to see if I can find one on sale. I did previously have one but it's living at my parents place which is much harder to keep airtight. It didn't even occur to me to buy a replacement for here.

#19 JustSmileAndNod

Posted 30 November 2019 - 09:54 AM

I second the nasal steroid spray - I have terrible asthma spring and summer but since starting mometasone spray daily I’ve had NO asthma and have had to use my preventer puffer. And I can sleep with the windows open at night! (Allergies to grass and severe hay fever)

#20 Lou-bags

Posted 30 November 2019 - 10:06 AM

I went to a research seminar on asthma last night.

He was talking about a drug called Dupilumab, which may be worth asking about. There are some awesome new drugs in development too, though he did give the standard ‘5+ years’ to market caveat.

PM me if you want me to rustle up some reading for you on the stuff he was saying (I’m not a respiratory biologist...)

#21 PrincessPeach

Posted 30 November 2019 - 07:34 PM

Something else that has come up recently, be aware of all ingredients in your inhalers.

A lot of them contain lactose/dairy proteins so if you are intollerant to dairy, they wont help you in the long run.

#22 MooGuru

Posted 01 December 2019 - 07:30 AM

Thanks everyone.
Dupilumab sounds familiar - I think that might have been mentioned last appt.

Oh I didn't know that Princess Peach - that's interesting, I have a mild dairy intolerance. Just causes an upset stomach if I'm not careful,  it doesn't impact breathing at all (well my breathing, those around me might disagree if I have a milkshake :lol:)

#23 PrincessPeach

Posted 01 December 2019 - 02:28 PM

View PostMooGuru, on 01 December 2019 - 07:30 AM, said:

Thanks everyone.
Dupilumab sounds familiar - I think that might have been mentioned last appt.

Oh I didn't know that Princess Peach - that's interesting, I have a mild dairy intolerance. Just causes an upset stomach if I'm not careful,  it doesn't impact breathing at all (well my breathing, those around me might disagree if I have a milkshake :lol:)

Ha, ha. Still might be worth mentioning though.




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