Brittle asthma: Hi all So apparently, I... - Asthma UK communi...

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Brittle asthma

Ghoulette
Ghoulette
28 Replies

Hi all

So apparently, I now have brittle asthma (was adult onset asthma about 2 years ago) and it is getting worse. Since I had a bout of a+e visits about 3 months ago, I find it is not getting under control. My consultant has added spiriva respimat in with my fostair (I am also on fexo and montelukast) and I now have a nebuliser for salbutamol.

I'm finding it really difficult to know how to handle it. I'm struggling at work (currently on a phased return) and only managed an hour yesterday before I had to admit defeat and go home. I saw the ANP at my surgery and she has given me yet another course of amoxicillin as there is a bit of noise on my chest (I had already started on 40mg pred last week after seeing her).

Thankfully i haven't had to go to a+e again (I think because I have access to my nebuliser) but I'm just so bloody frustrated with myself. It's like I go from 0-flare up/asthma attack in about a minute. The ventolin inhaler doesn't work so out the neb.

At my last appt, my consultant said he would look at introducing theophyllin/aminophyllin but wanted to start with the spiriva first. As i understand it, there are a lot of side effects with theophyllin? But does it help? I'd take the side effects if it meant I could have a chance at being normal and working without having to have the back door open (which is now becoming an issue because it's so bloody cold, but I can't breathe with it shut most of the time). Even just walking from the car to the hairdressers the other day killed me. I had to have lots of puffs of ventolin and then 2 nebs when I got home.

I'm sorry for the essay, I'm just feeling pretty fed up with it all at the minute and I hate pity parties, but I just want to feel better.

What other things can you guys suggest to try and help please?

Thank you x

28 Replies
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Huchins4

Hey!

Sorry to hear you're struggling.

I have brittle asthma and take uniphyllin as one of my treatments. It transformed my asthma, prior to it I'd be admitted every couple of months with most of them ITU/HDU. A lot of consultants don't like it because of the side effects but I found they settled within a couple of months of taking it. You just need to get levels checked as can be toxic if too high. You also need to avoid caffeine which I found easier than I thought I would. But then as you say, anything is worth it if it improves your asthma! Definitely worth asking your consultant more about!

Great you have a nebuliser at home, my consultant won't let me as is one of those that believe you need to be seen if you need a neb so I'm often at the GP surgery getting one!

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Ghoulette
Ghoulette
in reply to Huchins4

Hiya.

Thanks for the reply. I'm lucky that I haven't had to go past A+E, never been in ITU/HDU, or must be so scary.

I asked my GP that if I bought myself a nebuliser, would he provide the nebs and he agreed so I'm very lucky. I only wanted to to try and minimise trips to A+E, although if I've not settled after 2 nebs, then I know to go. But, I am under instruction to use it four times a day for a few days now while I'm in flare up.

I'm hoping they can add something to the mix as it constantly feels like I'm breathing through a straw at the minute.

I'm glad your treatment is helping.

Thank you x

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Lysistrata

HI, I've been on aminophylline (Phyllocontin sustained release brand) for 6 years now and it's been great with no side effects, so they're not inevitable! I really noticed when there was a shortage in June - I missed 3 doses (ugh) and my GP had to scramble to find an alternative which can't have been easy as it's a bit of an obscure drug. The brand I was switched to (Nuelin SA) was ok but gave me mild side effects even at a lower overall theophylline dose - so it can depend on brand too. Nothing major but felt slightly nauseated a lot which wasn't fun.

I hope the Spiriva works (I'm on that too) but if not I'd say worth giving the theo/amino a try because it might work and it's definitely not a given you will have bad side effects or any at all.

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Ghoulette

Thank you. I'm going to speak to my consultant about it when I next see him, which hopefully isn't too far away x

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BatuoShaolin

Hi! It seems your breathing problem with Asthma started only two years ago. Nevertheless, the downward spiral with your disease seems rapid to brittle Asthma. Science has somewhat, improved people's life to cope with their daily life and continue with new discoveries. But I can understand your frustrations, when you least expect the attacks in situations. I can only suggest you manage your environment with any cause that effects or springs sudden your attacks, that be at place of work or at home. Of course, since the problem has somewhat caused some form of deterioration to your lungs it does not mean it stops your attacks, it merely means it give you 'breathing space' at your regular environment. But to explain a system to manipulate your body tissue and help you with better control and the 'fear not' factor to attacks is easy for you to follow. It is an innovation I discovered and not available on the internet search engine. Keep watching my postings

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Statch

On uniphyline 400mg twice a day along with omeprazole to stop the upset stomach I get from the uniphyline. But can really tell if I miss a dose. Also take respimat and relvar 184/22 along with montelukast and for added measure carbocystine. Just had my latest theophyline levels result back and still sub therapeutic so probably another step up coming.

But with regards to aminophylline as a IV treatment in the hospital even with taking the tablets I cannot handle the nausea and it causes my 02 level to drop to silly low. The doctors cant understand why as I take the tablets lol

Seeing the specialist next month to start biologic therapy and I have high hope that I may stop using such a cocktail of medications.

And yes been told I have occupational asthma along with the brittle asthma, been a long 15 months from not being asthmatic to this so I understand the frustration of feeling like your life is on hold

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Ghoulette
Ghoulette
in reply to Statch

It's really hard to get your head around isn't it. From reading online, I thought brittle asthma meant you were basically in a+e, ICU or hdu on a regular basis (which thankfully I'm not) so I'm not entirely sure how they've decided I am but still in a steep learning curve anyway.

I really hope the biological treatment works out for you......would be much better than taking so many drugs I bet.

Thank you so much. It's reassuring to know I'm not alone in my feelings xxx

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Statch

The reason they have decided brittle for me is 11 admissions between August 2018 and my 2019. And under the care of 1 consultant and 2 other specialists in 3 different hospitals

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Ghoulette
Ghoulette
in reply to Statch

Blimey.....that's tough 😞. I've never been fully controlled since it started but it all went nuts about 3 months ago with 4 a+e trips. I think my nebuliser is helping to keep me out of a+e at the minute thankfully 🙄.

I really hope they can get you sorted and stable soon x

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Statch
Statch
in reply to Ghoulette

Bought myself a nebuliser to try and help but got told off by my specialist. And told if I need to use it get medical help straight away. Not giving you advise on this I still use it from time to time and ignore my specialist probably not the best idea but don't want to go hospital as don't want to be a fuss

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Ghoulette
Ghoulette
in reply to Statch

Exactly......I always feel like I'm taking up time that they could spend with someone else who might need it more. I don't like to bother them if don't have to.

My GP said that if after 2 nebs, I didn't feel better then I was to go to a+e which is fine.

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Ken6

Good evening Ghoulette.

I have adult onset asthma. My symptoms are different from yours but I shall mention one thing I do in case it helps you. I had a death defying asthma attack in 2016 before I was diagnosed with asthma.

I am now on Spiriva 2 puffs once per day, Fostair 200/6 2 puffs twice per day.

They are brilliant for me. I lead a normal life, I never miss a dose.

Sometimes I feel as if I am slightly chesty, when I use my peak flow it shows normal for me. Anyway when this happens before I take Spiriva or Fostair 200/6 I take one or two puffs from my blue inhaler. I believe this opens up my airways so the Spiriva and Fostair get deeper into my lungs.

Clearly you have a more serious problem than myself.

I hope you feel better soon

from Ken

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Ghoulette
Ghoulette
in reply to Ken6

That's a great tip Ken, thank you.

I'm awkward because my pf doesn't always change even though my chest feels really tight and I don't always wheeze either, and my SATS.....I can have 100% o2 and still be struggling.....my mum always said I was born awkward 😂

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SingingSam

Hi Ghoulette,

I have just joined this forum looking for somewhere to connect with others who struggle with asthma and came across your post.

I was diagnosed with severe brittle asthma about 26 years ago and now have home O2 + Bipap and am disabled by the condition, especially as brittle asthma used to be poorly understood. I have been on ITU/HDU/ Life support more times than I can count. However, today there are many more treatment options, so, hopefully, your doctors will find a treatment that makes a difference to you.

As regards Theophylline, I also take this in tablet form, with few side effects, other than some nausea and a faster heart rate, which settled after a week or so. Everyone is different and reacts differently to medication, but it's worth considering giving Theophylline a try. It has made some difference to me, most notably on how much I wheeze.

I really hope your consultant finds the right treatment combination to help you, but having a good social support network is just as important when dealing with a long-term health problem.

Wishing you all the best x

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Ghoulette

Thank you so much. I'm definitely going to ask my consultant about it at my next appointment.

I'm sorry that your asthma is so bad....I can't imagine having to deal with that daily. It must really take its toll 😞. You will find some amazing and wonderful people on this forum. Welcome to the family x

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SingingSam

Thank you for your lovely message Ghoulette. Will keep my fingers crossed that your respiratory team are able to help you. Look after yourself. X

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doonhamer1967

Hi, I started this year with seven attacks in the first seven months. I am on fostair100/6 eight puffs a day, spiriva tiotripium two puffs a day, Uniphyllin 300 mg twice a day, montelukast once a day and an anti histamine daily. I have not experienced any side effects from the drugs. It was predictable but scary, for family and myself. I have great support from the respiratory team at my local hospital and find recording peak flows and relative conditions (coughing, lack of sleep, work patterns) have been a great help. This data along with the frequency of attacks/prednisalone and tests convinced my consultant to recommend Mepolizumab. I started this three months ago and have had ZERO asthma symptoms since! It has been a rollercoaster three years from Late onset asthma diagnosis to severe eosinophiliac asthma diagnosis to increasing drugs which seemed to do nothing to attending my local hospital every 28 days for an injection and getting my life back. During this time it has felt like there is no future but thankfully the respiratory team have persisted and appear to have found a better place for me. Still a lot of time/unknowns to encounter but I am now positive and happy to live a normal life. Upcoming winter will be a test but I feel equipped to deal with it.

Asthma is hard but can be controlled, it just takes time. Be strong.

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Ghoulette

Wow!!! To go to zero symptoms is incredible. That must be so liberating for you. I'm glad they have found a treatment regimen that is working so well for you. I hope winter treats you well and you stay healthy.

I'm down to two nebs a day at the minute, as well as 40mg preds and the amoxicillin. I have definitely found the change in weather and temperatures challenge.

Thank you x

Thank you.

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doonhamer1967

Hi, just an update. I have had my first exacerbation since starting mepolizumab. Inhaled wood smoke whilst out walking the dog. Suffered three nights of interrupted sleep due to coughing but it has been sorted with a short course of prednisolone. I have went from 7x 40mg every four weeks to 3x40mg in three months. This latest episode has had a greater mental hit than the previous ones though. I thought I was invincible after the last few months, obviously not. Still, life is more normal than before.

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Ghoulette

Oh no.....that sucks 😞. I bet it came as bit if a shock after being symptom free for a while 😞. I hope you're looking after yourself and recovering well x

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Junglechicken

I’m sorry to hear that especially when you were doing so well. Asthma attacks do mess with your head in a big way. You rest as much as you need and eat well.

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Mariachristina76

How do you know which type of asthma you have because I don’t know which type I have thanks

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Ghoulette

I'm not entirely sure how they decided to be honest. My GP referred me to the severe asthma clinic and then I had a spate of a+e visits and the diagnosis was in amongst my notes that went back to my GP.

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Mariachristina76

Ok thanks

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Kelshaw2011

Hi ghoulette i too am a brittle asthmatic with many medications, spiriva respimat, symbicort, relvar, bricanyl inhaler and ventolin nebs every 4 hours, colomycin nebs twice a day, hypertonic saline nebs twice a day, uniphyllin 500mg twice daily,montelukast, carbocisteine, prednisolone 25mg daily ( been on steroids 4 years) dymista nasal spray, fexofenadine, alendronic acid,adcal, insulin due to being diabetes due to steroid use, mepolizumab injectuins and kenalog injections , i have many admissions to itu and need to b intubated i have been like this for 4 years now but brittle asthma runs in my family i lost my 8yr old daughter my dad and cousin all to an asthma attack my consultant has said there is no more that they can do as am on maximum therapy, but thank god i am still here fightin i really hope that u have started uniphyllin or similar as it did help me at first good luck

👌👍

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Ghoulette

Oh my gosh.....I'm so very sorry for your losses. I can't even begin to imagine how you manage to get up and out every day 😞.

I really hope my consultant adds in the theophyllin or similar, as it sounds like it would help me.

Thank you for replying. I hope you have as many good days as possible and that you stay out of hospital as much as you can xx

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Kelshaw2011

They say that uniphyllin is an old drug and some consultants dont rate it but i do think that some can benefit from it hope your consultant gives you at least a trial on it to see if it improves your symptoms good luck hun xx

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Ghoulette

Thank you xx

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