Jump to content
MooGuru

Severe asthma - interested in what's worked for you

Recommended Posts

MooGuru

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*

Share this post


Link to post
Share on other sites
ipsee

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).

Share this post


Link to post
Share on other sites
smilinggirl

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.

Share this post


Link to post
Share on other sites
PrincessPeach

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.

Share this post


Link to post
Share on other sites
Silverstreak

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.

  • Like 1

Share this post


Link to post
Share on other sites
Fennel Salad

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? ☹

Share this post


Link to post
Share on other sites
MooGuru

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
  • Like 1

Share this post


Link to post
Share on other sites
Silverstreak

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.

  • Like 2

Share this post


Link to post
Share on other sites
mandelbrot

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.

Share this post


Link to post
Share on other sites
amdirel

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

Share this post


Link to post
Share on other sites
Smoo

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)

Share this post


Link to post
Share on other sites
born.a.girl

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).

Share this post


Link to post
Share on other sites
MooGuru

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.

Share this post


Link to post
Share on other sites
ali-song

Have you had a trial of Xolair?

Share this post


Link to post
Share on other sites
MooGuru

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.

Share this post


Link to post
Share on other sites
born.a.girl

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

Share this post


Link to post
Share on other sites
MooGuru

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.

Share this post


Link to post
Share on other sites
JustSmileAndNod

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)

Share this post


Link to post
Share on other sites
Lou-bags

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...)

Share this post


Link to post
Share on other sites
PrincessPeach

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.

Share this post


Link to post
Share on other sites
MooGuru

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:)

Share this post


Link to post
Share on other sites
PrincessPeach

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...