Really fed up: I was diagnosed with... - Asthma UK communi...

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Really fed up

Wheezeydarth
Wheezeydarth
9 Replies

I was diagnosed with mild asthma 6years ago since then i have been hospitalised 5 times over the 6 years. Its now every year as soon as i catch a cold i end up in resus, icu ventilated , ccu then a ward all in around 12 days on average. Ive been resused 6 times , twice only a fortnight ago. Im on relvair 184/22 , spiriva ,flixotide 250, sabutamol nebules x3 per day. Prednisolone 15mg maintenance dose, fexofenadine180, Azithromycin antibiotics 3 days a week,montelukast, omeprazole and uniphyllin 300mg. I have over the years met with numerous doctors gps and consultants. Last week i was actually told for the first time i have type2 brittle asthma. Prior to this i was told i had mild asthma but just needed extra help. My questions if anyone can answer. 1. I thought brittle asthma was from birth and not something that could come on at any stage is this correct as i was pretty lucky as a child and cant remember missing a single day of school. 2. Most of the year im pretty good chest wise and can keep myself out of ambulances and hospitals is this normal for brittle astma as i would have thought symptoms would be present everyday.

I have recently been asked to take part in a test where i have to take home a simplified ni ox test and do this at home everyday after i have taken my inhalers for a week then return ni ox machine to hospital so they can download info. Has anyone done this or heard of this consultant told me its to check inhalers are working.

Thank you for reading all of my garbage and for any answers you can give me.

Guess the main thing is no one in my family suffers from asthma so i havent anyone to ask advice from. Is the medicines im taking normal for mild asthma or do they look more like brittle asthma. My reason for asking im worried about my job im a freelance engineer but i will have to travel abroad next year and i know brittle asthma on my medical records will prevent me going. Many many thanks again for any help Jim

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EmmaF91

Hi Jim

Oh you’ve been through the wringer! 😔

With that med list I’d definitely say is severe asthma (the ‘newer’ term for brittle asthma in the uk I think).

I have severe asthma, currently uncontrolled so think I’m type 1 under the old brittle categorisation. I can have daily symptoms (tho getting more and more days with less and less symptoms since starting biological treatments), but I can also spiral drastically in a day if I hit the wrong trigger (which is type 2).

Before I was 13 I didn’t have anything respiratory issue, got diagnosed with EIA then, had my first proper attack at 19 and became a mild asthmatic, then flared at 21 (turned moderate), then at 24(ish) I started the spiral to severe and I haven’t calmed down since 🙄 - so no it’s not something you have to be born with, unfortunately it can build up over time 😕. Luckily for me it’s usually a slow build so I’ve so far avoided intubation (close a couple of times) but can be in and out of resus a lot (type 2 ‘brittle’ is the sudden drop... fine one day, intubated the next)

Are you under a specialist hospital? If you’re not it may be worth asking for a referral... I know you’re currently only having flares about once a year but they are very severe ones! If your on fexofenadine for allergies you may be eligible for xolair, or if your eosinophil count is high you may be able to try mepo, but you’ll only be able to get them from the specialist centre 😒 I’ve only done FeNO once in hospital, but they’re probably trying to see how inflamed your lungs are when on all those drugs, but at home recovering.

My current drug list is relvar ellipta 184/22, Spiriva handihaler, avamys nasal spray, fexofenadine 180, prednisolone 10mg maintenance (currently 25 😒), alendronic acid, ranitidine and mepolizumab injections (ventolin/epipen/nebuliser prn). I have also ‘tried’ uniphyllin 200 (currently on hold due to HR/palps), montelukast (stopped working for me), carbocisteine (prn with infections), vitamin d, omeprazole, xolair injections and a multitude of preventers!

It’s really frustrating when doc don’t actually tell you your full diagnosis. I knew I had severe atopic asthma, but didn’t get told that until I had been put forward forward for Xolair and it was written on the info docs that that’s what it’s for. Then it was 6 months later that I got told I was actually eosinophilic too 🙄 (when I was about to change from Xolair to mepo due to hypersensitive reaction). A lot I only know cause I’m medically trained (I’m an osteopath) so was willing to research and able to not freak out from what I read 😳

Sorry to hear how this diagnosis may effect your job... because you only spiral when ill it may be worth talking to your boss/HR (wherever your protocol is 😅) and explain the situation... explaining that you only drop when you’re sick may persuade them to let you travel... it’ll be travel insurance you find more difficult to get if they do ok it.

I hope that helps explain things a bit. Any questions fire away... on here are lots of asthmatics with lots of experiences... any question with have an answer from someone, or someone with a relegate experience!

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Wheezeydarth

Thank you Emma for your reply feeling better already. Im in Glasgow with a really good respiratory team and now with a fantastic new consultant. I will post with more details about this new test hopefully with proper names lol. The test are being done at a research dept at another hospital to my usual but as i said i will post more details. Thanks again sounds daft but was feeling slightly alone and unsure of questions never mind the answers but feel easy now about asking. Wish id done this years ago.

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EmmaF91

You’re welcome. It’s not daft to feel alone in this! Severe asthma can be a very isolating disease as very few people actually understand what you’re going through (tho many will try and offer you their opinion of what will help you 🙄). Just knowing people are out their in the same situation can really help (tho I wouldn’t wish it on anyone). Once I found this place, I also wished I’d found it earlier!

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HungryHufflepuff

It's not garbage, it's really scary sometimes and it can really help to talk here and get advice and just be among friends. I ve had asthma all my life but am the only one in the family to have a respiratory condition. It can make you feel utterly alone. I can't really answer any of your questions but I wanted to reply even though it's not very helpful!

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Wheezeydarth

Thanks for your reply it can be scary. My worst though is the guilt i feel when i come to in icu and see my wife and family red eyed, thinking ive done it again dragging my family through hell. But feeling better just wished id read and posted here years ago. Just reading the comments gives me the strength and confidence to overcome anything that lands on my path many thanks.

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Pipsqueak77

Hi Wheezeydarth

I just wanted to reply with a bit of positive news...!

I get ‘bad’ asthma.. not sure what type and tbh I’m not that worried about what it’s called.. for me the important thing is how to control it and most importantly - live as best as possible with it!!🤔

I have a similar story/meds to yourself and have had several admissions.. ( won’t bore you with details...😜)

but what I wanted to say was that I work full time, which includes travel abroad and in this country and I have not had problems with insurance...

I think it is important to be honest about your meds/admissions but there are companies that don’t seem to get so up tight about things now. Granted I have not had ICU admissions so don’t know if that will make things more difficult but your company should have quite good blanket insurance for their employees who are travelling away from home... maybe ask HR or your OH for more details? Don’t be put off if you really have a mind...

I just pack up the nebuliser and meds and off I go...!! So hopefully you will be able to aswell!

Good Luck - fingers x

Pipsqueak

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Wheezeydarth

Thanks Pipsqueak I will need to have a sit down with my hr team hopefully it will work out. I did try and travel to the US last year but could not get Insured as id been incubated only 3 months prior. But fingers crossed. I did have my gp telling me it would be best to change my job incase the stress might be a factor. A joke asked him would he change his job answer was silence. Good to hear though that you can still travel and work as normal. Many thanks

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Pipsqueak77

Hi Wheezeydarth

That’s such a coincidence.. I have had much the same conversation and reply from several of my own doctors !!😜

But joking aside.. I hope you are able to get a bit more control and manage your work/asthma balance. I would be absolutely devastated if I had to give up my work... for many many reasons.

Good Luck ... and don’t give up without a fight!

P 👍

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robert1957

hello wheezeydarth please research magnesium deficiency and symptoms of magnesium deficiency thankyou and good luck

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