Uncontrolled asthma

[jamieb977]

Help I'm so frustrated and confused, 2 years or so ago I was ok just blue inhalor was quite active etc

Had an exacerbation then covid and then went on basic brown inhalor then luforbec

Seretide 125

Fostair nexthaler

Montelukast

Trimbow

Revalr ellipta

Was on seretide for 1.5 years, still very symptomatic but better than taking nothing,

Finally got ling function tests etc ans reffered to asthma clinic and they have prescribed the 3 last inhalors on the list in order plus Montelukast, none of them seem to agree with me, just make breathing worse and side effects.

The consultant said I have th2 type asthma, which is mildly raised eosinophil and feno and mixed allergic phenotype with very high igE (mine was 44 times over the normal range)

I only took the revalr ellipta twice as made me feel so bad, im taking fostair atm once a day as thats all I can tolerate to at least get some steroid in my lungs. I've not even rung the gp or asthma clinic as I don't know what to ask for, am I missing something here why are none of these inhalors helping me ? Am I intolerant to them, I feel like a medical mystery here. I'm gonna ring the asthma helpline people recommend on here on Tuesday but I feel so stupid, suffering for 2 years and nothing seems to work at all and in same cases treatment is worse than the disease.

[shadyshaderton]

Sorry to hear you are going through a rough patch. Changing meds can be difficult and take a while to get used to. Must say am surprised that have you on both fostair and seretide at same time as usually it's one or the other. Are you using a spacer as that can help. Definitely contact your asthma team and explain your problems with the new medications so they can help you.

[jamieb977 in reply to shadyshaderton]

Thanks yes I feel rubbish tight chested, no energy at the moment.

Sorry to clarify I was on seretide for 1.5 years then the asthma clinic changed me to fostair nexhaler which is the powder version so you don't use a spacer with it, I didnt like it so went back and got trimbow which I hated then I got revlar ellipta which again I hate so im back to using the fostair which I had left over from before.

my current prescription is still for the revlar which im not going to use so I dont know what to do now really, my gp is useless and the asthma clinic released me back to gp now so stuck with inhalors that don't work and make me feel worse.

[Shawshank62 in reply to jamieb977]

Hi, that’s rubbish for you. I’ve been in exactly the same position for three years now. I had no chest issues until I had covid started coughing after that and basically didn’t stop.

I went through all the medication gradually adding more and more, also montelukast. Was diagnosed with Bronchiectasis as well as severe eosinophilic asthma after CT scan.

I find Fostair seems to have worked better than anything else and use a spacer I’m on max dose. But take additional meds along side this.

Be persistent with your GP with hindsight I wish I had been a little more pushy and I probably initially underplayed it all as I think I was shocked at what was going on and that suddenly I was on so much medication. When there’s so much going on and you feel so rubbish it’s hard to know what’s helping.

Maybe try and get referred back to a specialist respiratory consultant via the GP you just have to be insistant.

Really really hope you can get some relief it’s all so annoying and frustrating for you.

[Patk1]

Have u tried the fostair pink mdi (lufrobec is generic of fostair)? I hope the helpline can point u in right direction.do use yr salbutamol inhaler if you need to ad it shld help you. Ru taking antihistamines eg loratidine,cetrizine r available over the counter - for Yr allergy element.hope u can settle adthma+ recover soon.helpline 0300 222 5800

[jamieb977 in reply to Patk1]

I've considered antihistamines, do they really make a difference for this type of asthma, I don't any other symptoms like sneezing, hives, running eyes etc

Raised igE markers were for cat and dog dander, grass pollen, border line for mould but the house dust mite was very high value 100 when normal range is -0.35

Going to ring helpline on Tuesday, thank you appreciate taking the time to reply

[Patk1 in reply to jamieb977]

Worth a try as grass pollens high and if u react to house dust mite too

[jamieb977 in reply to Patk1]

I'll give it a go can't hurt to try, do you recommend taking once a day in the morning as like a preventative

[ReedB in reply to jamieb977]

Hi, looking at your post you sound similar to me in your triggers. I use Fostair but it's the fine spray through a spacer on the mart regime. I don't get asthma symptoms all the time (at least not since being on Fostair) usually when pollen or virus. Powder inhalers gave me throat infections and even thrush in my esophagus so I avoid them at all costs!I also take Fexofenadine 180 which I find helps to control the allergies which then helps to control my chest, as well as a nasal spray.

So yes, worth trying an antihistamine especially where dust and grass pollen are a concern.

[jamieb977 in reply to ReedB]

Thanks I will definitely look into antihistamines, especially the one you said as similar triggers

[Patk1 in reply to jamieb977]

Yes I'd start like that

[Poobah]

I've looked back at your previous posts, just to get a fuller picture. I definitely recommend you talk to the Asthma UK nurses on Tuesday after the Bank Holiday, they can really help drill down to what could be happening and advise your next course of action.

My three major take aways are;

▪︎ You had Covid

▪︎ You were a smoker at the time you caught Covid.

▪︎ A variety of asthma inhalers & treatments have failed to relieve post-covid symptoms of breathlessness, air hunger etc.

Long covid symptoms can include shortness of breath, air hunger and/or dysfunctional breathing. While asthma treatments may help, if the symptoms relate to long covid (I'm not saying that your symptoms do), then other treatment plans may be more effective for you. It seems that your asthma team are treating asthma in isolation of other factors. But that is something to explore with the Asthma UK nurse, including your adverse reactions to your asthma treatments.

[jamieb977 in reply to Poobah]

It's confusing that's for sure, thing is I don't really wheeze or cough that much, the major feeling is sob described as hard to inhale, get a comfortable lung full of air, get puffed out quickly during physical activity even stairs/hills feel like i cant catch my breath fully, stamina is poor. I'm sure covid has had an effect on the raised eosinophil and igE as I didn't feel like this before

[Poobah in reply to jamieb977]

Having asthma can mask other diseases, and that's been my experience. I had been suffering from anaemia for around 2 years before a respiratory consultant decided to run a blood test as she actually listened to me saying that the symptoms weren't my usual asthma. Because the main symptoms were shortness of breath and fatigue, every doctor assured me it was asthma, despite me explaining that it was a different type of breathlessness. I ended up in hospital having an emergency blood transfusion as my blood count was so low. One of my asthmatic friends had a similar experience, but her SOB turned out to be blood clots. It took an emergency admission to hospital to finally get to the source of the problem.

Asthma isn't the only reason we experience breathing difficulties and if you're saying the symptoms feel different to your usual asthma experience, stick to your guns.

[jamieb977 in reply to Poobah]

Thank you, had loads of blood tests over last 2 years, heart checks etc and all ok so at least isn't anything serious

[Poobah in reply to jamieb977]

That's good. But asthma can be mistaken for long covid and, as far as I know, there's no test for that. Anyway, good luck in your endeavours in seeking a resolution and keep us posted.

[peege]

Each new inhaler takes a certain length of time to 'kick in, (check leaflet) they're not instant, I've made that mistake myself. Some take 2 weeks and some more. I'm not a medic however, it looks to me that you're not giving them a chance. If you're prescribed a preventer to use twice daily then of course using only once per day isn't going to control your asthma. I can only recommend you try giving your prescription a go. At the same time I see you've had a tough time of it with covid so when your lungs are back to normal you may find everything much easier. Many of us take a while to recover fully from it. The other thing is that many of us also find it takes a while of trial & error to get the right medication regime to suit us. I sincerely hope you get sorted. P

PS I use the Fostair mdi (spray type) with a spacer, I hate powder inhalers & refuse them. It seems medics prescibe powdered inhalers to reduce the carbon footprint but I think my tiny amount is insignificant compared to ropey old vehicles on the roads, smoke, etc etc. Let them go for bigger fry like factories not struggling asthmatics grrrrr

[jamieb977 in reply to peege]

Deffo agree there's so much more things they can target than asthma sufferers. I'm confused as I think things have changed since I first started on preventer medication. I went to gp's so breathless I was practically puffing and panting just sat there, wasn't until seretide I felt quite a,bit better at certain times of day, mornings and evenings are usually bad for me. When I had covid it messed up my digestive system I had chronic heartburn/bloating/reflix which effects asthma and breathing.

I did try fostair properly to start with but the longer I was on it the more breathless I got and tight chest plus made me bloat after food, now sometimes I think you just tell from the off that a certain medication/inhalor doesn't work and the trimbow and revlar were awful, both times took 2 days for effects to wear off, was like someone had put a tight belt round my chest, was just horrible.

Although the seretide was ok, was still very symptomatic and it did mess up my breathing, I remember laying down with the breathing physio while she was monitoring my breathing and I was gasping every 3 breaths, awful breathing pattern, then when I came off it and was taking the fostair sporadically my breathing function massively improved, currently when I wrote this post I had taken fostair the day before and that evening and felt terrible enoigh to write this post, I havnt taken it since, my chest/lungs feel better without it, not used my blue inhalor anymore than normal either but there is inflammation in chest I can feel it so I'm thinking the LABA is the issue as didnt have a problem with brown inhalors in the past so maybe I'm thinking I should ask for steroid only treatment

[Patk1 in reply to jamieb977]

Is there some reason u can't b prescribed the brown inhaler again

[jamieb977 in reply to Patk1]

Actually I've been thinking that, wondering if it's the LABA element in these combination inhalors that doesn't agree with me, I've not taken any preventer for 4 days now and not used my blue one any more than normal, 2 or 3 times a day and although I can feel tightness in my chest and a bit more tired my breathing is better and I feel more comfortable in myself not taking it.

When I first sought treatment my breathing was so bad but It could be the after effects of covid plus I had really bad reflux and now it's settled down I don't really need these strong inhalors and brown one may be ok

[Yellow-dog]

hi Jamieb977,

so sorry you are feeling this bad, I can empathise as I have uncontrolled asthma too, made much worse by covid. This is obviously a question for your doctor, but do you think a short course of oral steroids is in order? It might just get you “over the hump”.

Hope you get some answers soon,

[Corinne-Amy]

Hi Jamie,

I’ve had asthma for nearly fifty years and over the last few years it has got steadily worse with more drugs added to my daily regime. On Symbicort, Montelukast, Uniphyllin, Cetirizine, Salbutamol and Prednisolone - and it’s still not fully controlled.

I was recently referred to the Brompton Hospital (London) to their SARA clinic/day unit (Systemic Assessment for Refractive Asthma) and had numerous tests - not just lung related with a view to having biolologics if they think it will help. Your case/test results are discussed with a multidisciplinary team. I go back this Friday to find out what has been decided. I wonder if that may be the next step for you. It would definitely be worth asking your GP or asthma consultant for a referral. You need to attend a tertiary hospital for biologics, I think. The official name for biologics is monoclonal antibodies if you want to do a bit of research.

Good Luck.

[jamieb977 in reply to Corinne-Amy]

Thank you I hope you get help from it, im guessing my test results etc plus I've had no exacerbations in last 2 years means I don't qualify for that sort of level treatment I would think

[My_fairy]

Hi

As you said it’s type 2 inflammation that’s how it is. It’s very unpredictable and hard to control. You need to try different inhalers and a combination which works on you but this inflammation keeps going up and down hence you feel rubbish. I think you need a good respiratory consultant .. talk to asthma team to find out whose best in your area but spiriva and symbicort now atrovent worked for my daughter however still Uncontrolled never fully active again for 3 years this is when asthma is persistent basically

[jamieb977 in reply to My_fairy]

Seems that way unfortunately, so many triggers in the environment it can change not just daily but hourly depending on what your exposed to, I dont think ill ever breath normally again

[My_fairy in reply to jamieb977]

I understand your condition you are right this is a battle not just daily hourly … I think this is more like high eosinophil as for my daughter that’s been the cause of her persistent symptoms after a life threatening attack … you need respiratory specialist as GPs are very limited her your blood test again and asked to be referred .. speak to asthma uk helpline and get all the information once you explain your symptoms they will guide you

[jamieb977 in reply to My_fairy]

My eosinophil count was 40 which very said was slightly raised

[My_fairy in reply to jamieb977]

do you mean Feno?

[jamieb977 in reply to My_fairy]

Strangely enough both feno and eosinophil levels were 40

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[My_fairy in reply to jamieb977]

I don’t know much about it but my daughters feno has been over 100 and now it’s 55 before eosnophills we’re in hundreds now thousands so yes I think they aren’t very high for you … it could be allergies then making it worse … they should add anti allergy regime for you do find out

[ellamental]

Hi. I am on the biologics injections for eosophinal asthma and it has improved my life so much to the point I rarely use inhalers or meds now. I used to live on prednisalone and nebules. I never images I would feel well again. If I get a chest infection then my asthma returns and I feel awful again (but antibiotocs doxycycline do help then) but the rest of the time its pretty much gone after over 40 years of severe asthma. Good luck with it all. Asthmaa is rubbish as you know and it is exhausting. X

[jamieb977 in reply to ellamental]

Thanks I have wondered about biologics but never asked about them, I know they are expensive and probably my eosinophil count wasn't high enough plus no hospital admissions stuff like that

[ellamental in reply to jamieb977]

Yes they are expensive but if you need them the NHS should make it happen. My asthma nurse looked back over the years at my Eosinophils. I can't tell you what my levels were because patient access has stopped working for me but you might be able to find out what is required from the internet and what yours are from the surgery. I think the biologics are mostly so that people can live without prednisolone. I am not sure what the criteria is exactly though. Hope you feel brighter soon.

[jamieb977 in reply to ellamental]

Thanks i will definitely enquire and im glad yours is better managed with it, I get the feeling my eosinophils won't be high enough and I've not had prednisone for over 2 years now so probably don't fit the critera

[ellamental in reply to jamieb977]

It is worth asking. I don't know exactly what the criteria is but google says this...You may be offered benralizumab (Fasenra) if: your blood eosinophil count has reached 300 cells or more. Maybe prednisone might help though or to have an emergency supply if breathing gets really bad. I know a lot of people don't like them and they have many side effects but I have not had any side effects and was on them for many years (on and off) but not now. Asthma is such an awful thing and can impacts your life so much for so long. I hope things get brighter soon.

[My_fairy in reply to ellamental]

Can I please ask which one is it that worked for you and how long has it been working for? My daughter was put on omalizumab it was m brilliant but only for 4-5 months before she got resistant to it .. now she has been asked again for the new one but I am always worried that I hope it keeps working

[ellamental in reply to My_fairy]

Hi the one I am on is Fasenra. I think there are two other types. It is coming up to a couple of years. That must be so disappointing for your daughter! I hope the new one works better for her.

[My_fairy in reply to ellamental]

Thanks for your reply I think she can have this probably after 18 …yes same here fingers crossed the new one works

[PW_R]

hey Jamie, I feel your frustration. I’m in the exact same place, feel like my life is ruined. I did smoke to be fair but chest infections have now led to chronic bronchitis, and more recently small airways disease (this is similar to emphysema in that it can get cause shortness of breath). You don’t need to have bad spirometry results for you to be quite effected by it. Do you know what your dlco is? I also find no benifit from the inhalers, when I pushed my consultant recently he essentially said ‘we don’t really know if the inhalers help that much’. They seem to help some people and make very little difference to others. Let me know if you want chat or anything. Seems like both our life’s have been turned upside down and a relatively young age (I’m 40 this week). P

[jamieb977 in reply to PW_R]

Tell me about it yes, it's horrible I'm a 20+ yr smoker so my own fault I guess but javnt taken a normal breath in 2 years, from what I've read small airway disease fits me as well but no proof so could be wrong, my dclo was 103% but I couldn't find any info to what that means, even the blue inhalor doesn't give me much relief anymore when it used to be a satisfying blast

[PW_R in reply to jamieb977]

I also smoked for 20 years and stopped 7 years ago. I got a severe chest infection 2 years ago which left me with chronic bronchitis. My most recent infection has left me with small airways disease and I’m in so much worse shape. I somehow lost 25% of my Dlco, which is to do with gas exchange. Yours is still perfect so that’s good. I also have some air hunger / breathlessness but I think for me it’s not getting the air out rather than in (air trapping is very common in SAD). I’m waiting to be tested. Crazy how even when we stop smoking chest infections will continue to destroy us.

[jamieb977 in reply to PW_R]

I feel the same, air hunger but for me its like I cant inhale properly, but that could be due to not getting rid of the air properly like you say.I did wonder if you have issues with food at all ? Eating makes me bloated and effects my breathing a few hours after and seems to trigger asthma symptoms, its like my diaphram is being squashed is the best way to describe it

[Itswonderful]

that's horrible for you. Even if you don't know what to ask for contacting the asthma team who are caring for you and telling them what you have written here is a hundred times better than them being in the dark. If they don't know what's happening they can't do anything at all. ?

[Birthday60]

it’s taken me 18 months to stabilise post covid and I wasn’t a smoker, I was really fit and a XC skier. I focused on the fact that being breathless is quite normal but as an asthmatic I assumed that it was my asthma causing if rather than my just not being fit after illness. Take your meds regularly and correctly and get exercising. It’s super hard of course but worth it

[Africanleopard Verified User]

Dear Jamieb977

Sorry to hear that you are having such a difficult time. Are you sure that you did see an asthma specialist at the ‘asthma clinic’. If they did confirm you do have Type 2 asthma you should be responding to the inhaled steroids. So first thing is to insist on a referral to a severe asthma service where there is an asthma expert to see you. They will confirm the diagnosis, and decide if you have severe asthma and prescribe appropriately - which if you have severe asthma will include a biological asthma treatment.

Next, while waiting for the specialist appointment suggest ask your GP for a low dose (100mcg) Fostair pressurised inhaler ( pMDI) not the dry powder) with a spacer if you can’t use the inhaler properly . Then use this as maintenance and relief ( MART ) treatment - ie 2 puffs twice a day and the same drug as needed ( instead of the blue salbutamol for relief). ( if you can’t use the Fostair pMDI- there are other drugs licences for MART - Spiromax, Buformix, Symbicort, low dose fostair dry powder) - which come in different devices) . For detailed information have a look at the diagnosis and treatment chapter s in the GINA Strategy document at ginasthma.org/reports - this is the international evidence based asthma guidance)

Also do speak to the L&A asthma nurses while waiting for the specialist appointment.