Advice for difficult asthma? - Asthma UK communi...

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Advice for difficult asthma?

MrsCMK
MrsCMK
47 Replies

As ever, when I’m looking for advice I always reach out to this community....

My asthma is proving to be really difficult to treat and for the first time, it’s getting me feeling a little worried. (When I say worried, I’m not anxious or winding myself up with stress, it’s more me realising that it’s worse than I really anticipated).

The last 18 months have been long but since April, I feel like I’m stuck in the longest flare that won’t go. Since then, I’ve had 4 courses of pred (adding on an extra week to my 4th course tomorrow which will technically make it 5 courses), 2 courses of antibiotics for 2 chest infections and I’ve had 2 attacks. I practically live at my GP surgery- haha!

I’m doing everything that I can to help myself but nothing is enough and as the weather keep changing, my symptoms are getting worse and I’m becoming more hypersensitive to my normal triggers.

My care has now been transferred from my respiratory consultant to an asthma specialist and I’m being seen by them for the first time in a week but it literally feels like a lifetime away. I’m 33 but my body feels so much older! Every day I wonder how on Earth I haven’t been rushed into hospital because it feels like it could go that way at any point. I don’t wheeze but get terribly breathless. Over the last month however I’m getting more of a really tight chest that comes on quick and aggressive- thanks heavens for salbutamol when that happens though!

Any advice that can be spared?

Thanks in advance ☺️

47 Replies
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Brittleasthmatic

Hello,

I am sorry you are suffering and when the realisation its worse than you though it can be a difficult time. I hope you have a great support network as that can be essential. I am glad the referrals have been made for you.

I also suffer with severe brittle asthma and have had 20 hospital admissions in the past year ( I'm 18 and get how you mean about your body feeling older lol )

I would see about updating your medication or inhalers with your gp or even addressing any changes in your life that could be factors as to why your asthma has worsened - such as environmental or new pet ect

Hope your ok x

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MrsCMK

Thanks for the lovely reply and sorry to hear that you’ve been so very poorly this year too!

My GP has been pretty good but has kind of admitted temporarily defeat- he’s as eager as I am to see what the asthma specialist decides to do next. For general care, I’m at the top of the treatment pathway so we’re just fire fighting with pred (which isn’t great). I think they want to go explore biologicals as this has been mentioned by my immunologist and my respiratory consultant a few times but who knows.

You’re definitively right in saying it’s something in my environment...I suffer with really awful allergies and I’m 99% positive that the pollen starts the inflammation and then my other triggers (damp, wet weather, cleaning products etc) then have a field day!

I never thought I’d see the day that I have to wake up an hour earlier than I need to for work because of how getting ready in the morning tires me...🤦🏽‍♀️

I really matter of fact when it comes to thing and try to keep a positive attitude, reminding myself of what I’m in control of but it’s safe to say that I’m feeling pretty frustrated now. Roll on that appointment next week! ⏰

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Brittleasthmatic

I am awaiting biologics too. I'm sorry things are so hard for you and I hope your hospital appt is useful next week. Have you tried a dehumidifier? I have one in my room to help with the damp in my house x

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MrsCMK

I haven’t tried one but I did mention this to one of my consultants (can’t remember whether it was immunology or respiratory) and they said not to waste my money. I think it could be worth a shot though.

I hope your wait for biologicals isn’t too long 🤞🏽 and thank you!

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Minushabens

I'm really sorry to hear about your difficulties. If you're trying all the usual things then it's hard to say what might help other than have you checked out other complications? It might be worth asking (if you haven't already) to get a ct-scan &/or some blood tests to assess things like bronchiectasis or other things.

I hope you feel better soon.

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MrsCMK
MrsCMK
in reply to Minushabens

I’ve got myself a list for my appointment next week and I’ll definitely add that on!

I have a feeling that nothing major is going to be achieved unless the worst happens and I end up in hospital. The same happened with my allergies- I had suffered for many years and no-one took me seriously until my second anaphylactic reaction.

Thanks for the advice 😌

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doonhamer1967

Sorry to hear of your struggles. I have had seven exacerbations this year requiring prednisilone. The last few times higher doses (60mg) have been needed to achieve "normality" . I am grateful that I have a great respiritory team at my local hospital (DGRI) who have followed the guidelines (https://www.sign.ac.uk/sign-158-british-guideline-on-the-management-of-asthma.html) which led me to using fostair, tiotripium, montelukast, theophyllin and an antihistimine. As the problems persisted I have now been given mepolizumab injections and so far the results have been amazing. The last 5 weeks have reminded me of life before asthma ( I have late onset severe refractory eosinophilic asthma diagnosed 2 years ago). Early days yet but I have benefited from understanding the plan my consultant and her team are following. Keep talking to your consultant and understand there is a normal future ahead. It just takes time for the process to unfold.

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MrsCMK

It’s so lovely to hear that after your struggling that you’re finally feeling better again. It’s so reassuring to hear!

I think the most difficult part of getting a my diagnosis categorised and finding treatment to match is that I don’t wheeze and my chest is tends to be generally clear. I try and focus on the positives and it’s nice to know that I’ll be seen by the correct team next week and that should be the start of getting things under control again.

I’m going to take a look at those guidelines ☺️ Thank you for the advice!

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Ground

I suggest that you take a closer look at your home environment and possible get your home tested for pollutants/triggers .

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MrsCMK
MrsCMK
in reply to Ground

I think that could be a step that I’ll need to take at some point but not sure if it’ll help right now because I’m triggering wherever I go- whether it be in my car, at home, at work etc. The weather definitely has a significant role in my symptoms.

Thanks for the advice!

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Ground
Ground
in reply to MrsCMK

Try looking for the common triggers in home/car/work,foam furnishing/plasic/chemicals as air fresheners/cleaning chemicals,hope you find what triggers you and i wish you well.

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MrsCMK
MrsCMK
in reply to Ground

Thank you so much for the tips...I’ll definitely do this 🙏🏽

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Statch

After 12 admissions in the last 12 months. Got referred to a amazing specialist team at north Manchester hospital. Who have now decided to put me forward for biological injections just awaiting date for that to start. And I really hope it works. For yourself mrscmk all I can suggest is I got put on spiriva and the relvar as preventers and they have been a lot better than fostair haven't had to use the salbutamol nearly as much

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MrsCMK
MrsCMK
in reply to Statch

Oh wow, you must be so exhausted but sounds like you have such a great attitude ☺️ I’m currently on Relvar so Spiriva could be an add-on? I think I’d like to try some add-on therapies before biologicals (that’s if my consultant suggests it that is).

Thanks for the advice and sending well wishes!

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Statch
Statch
in reply to MrsCMK

Thanks for the wishes. Forgot to mention also on uniphyline 400 as well got started off on the 200 but after blood tests have been gradually moved up in doses. Something about low theophyline levels and a Timothy grass allergy which after a bit of research is cross reactive with certain foods have removed them from my diet along with sulphites and seem to be coping a bit better

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MrsCMK
MrsCMK
in reply to Statch

That’s so interesting that you mention cross reactivity of pollen in certain foods- I’m highly allergic to pollen, to the point where I react (in an anaphylactic way) to some raw fruits and veg. I also learnt from reading on here the other day that my wheeze to strong squash isn’t in my head and it’s possibly caused by sulphites. I wonder if I’m more sensitive to sulphites than I realise? I’ll explore this with my immunologist and in the meantime, try and eliminate them from my diet.

Thank you ☺️

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Statch
Statch
in reply to MrsCMK

Have so far had to eliminate from my diet celery which is harder than you think as in all sorts even Tommy ketchup,peanut,shellfish,raw onion and bell pepper,radishes. Are all on the avoid list. Had a blood test result today have to add turmeric and brilliant blue food colouring as well. This is all new to me got diagnosed with occupational asthma and allergys and bronchiectasis just over a year ago having never had asthma prior

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MrsCMK
MrsCMK
in reply to Statch

Oh wow- it does appear in a lot! Seems like you’ve had to deal with a fair bit in a short space of time!

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Js706
Js706
in reply to MrsCMK

I know this also isn’t advice but I’m so glad to see someone else who can have anaphylactic type reactions to raw fruit and veg from oral allergy syndrome! (Well, not glad that you also have that problem but you know what I mean!)

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MrsCMK
MrsCMK
in reply to Js706

You’re a sufferer too? I’ve never come across anyone else with serious raw fruit/veg allergy before! I’ve been like it since the age of 13 but when I reached 21, the allergies kept getting worse each year. Just when I thought the allergies couldn’t evolve to anything worse, asthma then reared it’s ugly head and the rest is history!

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Js706
Js706
in reply to MrsCMK

Yep!! Stupid pollen cross reactions! 😂 I think mine started when I was about 17/18 or so and then my asthma flared a couple of years after that.

I’ve had some very confused looks before in A&E when they asked what triggered off the symptoms and I said “I ate some melon”.

The veg isn’t too much of a pain at least but oh my god I really miss strawberries.

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MrsCMK
MrsCMK
in reply to Js706

Haha- yes, I know those looks so well. Being pumped full of adrenaline and blue lighted to A&E because of corn on the cob was certainly a defining moment for me 😂

Cauliflower, broccoli and asparagus are my friend. Anything else that falls under the umbrella of fruit/veg are the devil!

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Js706
Js706
in reply to MrsCMK

Oh dear 😂 yep I can imagine! They often get very confused with me and can’t decide whether to charge down the asthma treatment or allergy treatment as it sets both off together - so they normally end up dithering.

Thankfully the only one of my cross reaction allergies that is anaphylactic at the moment is nuts (trust me to be the weirdo who has to use epipens for a non-primary nut allergy!) but they are worsening. My mum always gets creeped out because I end up with weird “blisters” on my eyes if I rub my eye after handling raw fruit... (attractive I know)

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MrsCMK
MrsCMK
in reply to Js706

Oh my goodness- haha!

I’m similar in that respect, I just say “hit me with some adrenaline and get me on a nebuliser” 😂

I tested positive for a true nut allergy but despite never having issues, immunology advises me to avoid them just in case.

It’s so nice to find someone that I can laugh about this with!

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Js706
Js706
in reply to MrsCMK

Yep! I often just sit there like “I really don’t care what you treat this as, just please STOP THE ITCH”

My mum has a bad nut allergy, so despite me not testing positive for true allergy I’ve always avoided them anyway so that one hasn’t been too much bother at least. Aside from the time that I was given a peanut oil based cream in hospital (you rub it up your nose to make sure there’s no MRSA) - cue panic and epipens at the start of the ward round 😂

It definitely is! I feel like it’s such a ridiculous problem to have you just need to laugh about it.

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Hannah125

I'm sorry you have to go through this. I can't offer any advice as I'm myself going through something very similar but I would like to say just keep fighting because there has to be a solution!

I've had 2 asthma attacks in May and I had forgotten how it felt like because the last time I had one I was 6! I'm now living with constant chest tightness and inflammation as well as shortness of breath (can't leave home anymore except to see doctors!) and I'm struggling to accept the idea that this might be my new life from now on. This flare has been going on for 8 months (since February) and it seems like it won't go away. Like you, I've had oral steroids and they didn't change anything. For some odd reason, my asthma seems to be resistent to all the drugs I've tried so far!

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MrsCMK
MrsCMK
in reply to Hannah125

Oh wow, this sounds so much like me! It seems like you’ve had a pretty raw deal!

Every day I’m short of breath and the tightness in my chest is getting worse by the week. Taking pred also doesn’t feel great either- I get so sweaty, agitated, dry mouth, thirsty and my appetite is through the roof- haha. I wouldn’t mind taking them if they were effective but I’ll keep going for now.

Do you mind me asking, do you suffer from allergies also? x

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Hannah125
Hannah125
in reply to MrsCMK

The last time I was tested for allergies, they found that I was only allergic to dust mites. What's weird is that I've been allergic to dust mites all my life and I'm used to having very high Ige levels but before the flu I didn't have any symptoms!

Right now I'm having a hard time finding my triggers because my symptoms are permanent (no matter where I am or what I'm doing!) so it's very hard to tell.

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MrsCMK
MrsCMK
in reply to Hannah125

That sounds so frustrating that you have permanent symptoms. Luckily I do get briefs periods of respite from mine- even if these are momentarily, it’s something. I surprise myself with how I well I manage, I still make work every day and etc but I feel like my body is really slowing down now.

My IgE levels are off the charts so I know that plays a great part in what’s going on with my asthma, however my “normal” allergic symptoms (sneezing, scratchy throat etc) are the best controlled they’ve been (with plenty of meds) which is a plus.

I sound like such a moaner here, all my gripes seem to be coming out in this thread...I’m not usually like this, I promise haha- I’m just a little frustrated this week. Can I blame the pred for that? 😂

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Junglechicken

I'm so sorry you are ill. If it's not too personal a question, could I ask where your peak flow is percentage wise in relation to your PB at the moment? (I sound like a medic, don't I :-) ). It will just give me something for me to compare as my asthma hasn't been great either

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MrsCMK

Haha, I trust where you’re going with this ☺️ My peak flow rarely drops, which can make what’s going on a little hard to judge.

My PB is 500 (woohoo) but I tend to hover around 450 (90%) and at my worst I was at around 350 (70%). However, one thing that I can rely on my peak flow for is that if I suddenly drop by about 8-10% (in a day), that usually indicates a pending attack. It’s a rough science but I it works for now c

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Junglechicken

Thank you for sharing that. In mutual recognition of sharing info. My PB (440) at the moment is flirting with 80% mainly, at my worst it was consistently at 75% and before an attack it was at 68%. I think at the moment, I’ve not got full control yet. I'm trying not to worry about it too much. On this forum I see people with such strength in the face of terrible symptoms. I wish I could be half as brave as they are. Makes me feel quite embarrassed that I am so anxious about my asthma.

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MrsCMK

I certainly wouldn’t feel embarrassed at all, I think it’s easy to lose sight of how difficult it really is to live with asthma. Just remind yourself that if you were walking around with a visible injury and looking at it every day, you probably wouldn’t be as hard on yourself as you are. It sucks that breathing comes as a chore but (without trying to sound patronising) you’re doing ace 👌🏽❤️

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Junglechicken

Thank you for your kind encouraging words.

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Chip_y2kuk

What medication are you on? Has your gp tried adding therapies instead of throwing steroids at you all the time?... I would agree you need something else

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MrsCMK
MrsCMK
in reply to Chip_y2kuk

I totally agree. I’m currently on Loratadine (a super, off-licence dose) for my allergies, Montelukast (which has completely gotten rid of my wheeze and helps with the allergies), Relvar and salbutamol. I’m also on Omperazole to keep my reflux at bay.

In the last 12 months I’ve gone from Clenil, to Seretide, to Fostair, to now, Relvar.

I’m still intrigued as to what my actual asthma subtype is- this will give lots more clarity. It’s definitely something to do with my allergies but there must be something else causing a complication. I’ll know more once I’m seen by my new asthma specialist next week but I feel that educating myself is also important so I can make the most of my appointments 🤯

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Chip_y2kuk
Chip_y2kuk
in reply to MrsCMK

If you have allergies a common one to be on (both idea why) is symbicort

Also have you tried fexofenadine instead of loratidine?

And spiriva respimat?... spiriva might be good for you with the chest infections

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MrsCMK
MrsCMK
in reply to Chip_y2kuk

I forgot to say, I had tried Symbicort a few months back but my breathlessness was uncontrollable, which was a shame.

I was on Fexofenadine for quite a few years (all 540mg a day) but I was waking at the early hours with a swollen, itchy throat. Since I’ve been on Loratadine (I take these 4 times a day instead of the licensed once a day), my allergies have been great.

I’ve heard such great things about Spiriva- I’m hoping I get to give it a try and would like to think that it’ll have an effect. I’m so excited for the day I try something new and weeks later, I feel relief...🤞🏽😄

Thanks for the advice!

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Chip_y2kuk
Chip_y2kuk
in reply to MrsCMK

Spiriva works well for me and I breathe better with it the common (cheaper) alternative is braltus... same thing different form, braltus is powder and spiriva is liquid

I've been on fexofenadine for quite sometime after swapping from loratidine

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emmasue

I don't have much advice, just sympathy. I have had asthma all my life. I am now 42. The past ten years have been terrible. The past 18 months have been worse. I ended up in hospital in March 2018 with the flu. Since then, I have lost my job due to ill health, my husband moved out because I am "too fat" (thanks a lot prednisolone) and I have been signed off as too ill to work (a double edged sword). I am waiting for a referral to an asthma consultant. My uncle (a rheumatologist in America) thinks that biologicals will work. Hopefully I get better than this. I don't want to be like this for the rest of my life. I have two children, and I feel bad that I am sick so much. I am still working through all this. I hope you find your way too. x

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Junglechicken

I can’t imagine what you are going through. I’m crying over your story. I’ve such a supportive family behind me. My mum who is also moderately asthmatic has been sitting up with me during the night during and after an attack. Dad has taken me to the hospital and also sat with me through the night when I was terrified to be on my own. I’ve had neighbours checking on me and offering to take me up to A and E if I ever need to. I’ve had to take some time out from work since June to try to recover and get myself back under control. Not sure when i’ll be able to return. I hope you get everything sorted out. Nobody deserves what you have been through. Asthma is taken so lightly these days by those who have never experienced it and take the ability to breathe for granted. It’s a cruel, horrible chronic illness that doesn’t care how many lives it destroys. Sending loving and healing thoughts your way.

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MrsCMK
MrsCMK
in reply to emmasue

Thank you for the support.

My goodness, it sounds like you’ve had such a rough ride- I’m so sorry to hear of that. I hope you find an end to your symptoms for you and your children to go on and live a fun life ☺️

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emmasue
emmasue
in reply to emmasue

Thanks both. Hopefully things improve for all of us. :-)

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hilary39

I'm so sorry, this sounds miserable. Long flares like that are so rough because you start to fill with despair and wonder--will this ever be over?! I just started Xolair and it seems to be kicking in after four months on it. It's a wonder drug for some people with severe allergic asthma. Nucala could be a good option too if you have high levels of eosinophils-

I pulled out of my last flare (6-8 months?) with prednisone (then hydrocortisone bc my adrenal glands got so taxed by months on steroids!), patience, hiring a cleaner for the apartment, not allowing people with pets to stay with us any longer (they bring too much pet hair into the apartment for my sensitive body), taking tons of vitamins (I swear they help--magnesium, fish oil, vitamin D, selenium), and starting Xolair.

I'm sure you have an air purifier and allergy covers on your pillows / mattress but mentioning those just in case--even if you have just a mild allergy to dust spending 8-9 hours a night in a dusty bed can be a big ongoing trigger.

Good luck and be gentle on yourself!!

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MrsCMK
MrsCMK
in reply to hilary39

Thanks for all of this amazing advice!

I’m not having a good day today- started off feeling great but as the day has gone on, I’m completely sapped of energy and really breathless again. In fact, I feel pretty rotten and to top it all off, the pred side effects are making me feel even worse...ugh! Only 6 more days until I finally see an asthma specialist but I’m wondering whether I’ll make it until then without ending up in hospital because my body is slowly giving in.

The more I hear about biologicals, the more I’m hoping that this option will become a reality as previously hoped. It sounds like your hard work in figuring out your triggers and what you need to keep symptoms at bay have really worked for you and has given a huge morale boost!

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Js706

Sorry to hear that you’re struggling a lot! But glad that you’ve been referred now 😊 fingers crossed they’ll be able to help you get back on top of things!

But it does sound like you’re doing the right things with trying to manage triggers etc. Asthma is such a pain!!

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MrsCMK
MrsCMK
in reply to Js706

Thank you for your kind words. Hopefully relief isn’t that far away now. Keeping everything crossed!

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