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Advice/ help Eosinophilic Asthma

Littlerunner14 profile image

I would really appreciate some advice. I have a diagnosis of mild Eosinophilic Asthma. I had an asthma attack in March this year. I required three lots of Prednisone and antibiotics to recover. I’m also on Fexofenadine 180mg, Flixonase, Esomeprazole 40mg and Sucralfate, Montelukast, Fostair 200 and Ventolin. After my lungs had recovered in May I suffered with servers dizziness and on one occasion ended up at A&E for an anti sickness shot, prescribed 2 lots of medication for this and diagnosed with Labyrinthitis. Recovered slightly then in August started to suffer with my ears, blocked /ear pain). Prescribed Prednisone, Antibiotics and ear spray as ears totally swollen. Began to improve but had to go off sick today as my lungs feel inflamed, shortness of breath, sore chest and wheezing if exerting myself. I am waiting for my GP to call, I will be emailing my respiratory consultant. They don’t know what else to prescribe me. I feel so fed up with this and frustrated they can’t offer me any medication to stabilise me. In the meantime I’m receiving warnings from work as I’m off again which doesn’t help with trying not to get stressed which aggravates my symptoms. I feel so depressed living like this. Any advice would be appreciated regarding a treatment pathway.

30 Replies

Sorry you are going through a very bad time.I feel your pain and asthma can be hard and draining. I have a cough since 2015 and diagnosed in 2016.and still have the cough now which drives me mad. Hope you get sorted out soon it is very hard illness to deal with.

Thank you, it is so debilitating, I know I’m a bad patient, but you feel so helpless.

Hi Sorry to here that you are having these problems. I have along with 3 other lung problems I also have severe eosophilic asthma. I have learnt to cope along with great support from all of the medical profession and my family. I suggest that you ask to see a physiotherapy to help with breathing. Keep taking your medication as prescribed and as you probably already know it can take up to 8 weeks for any change in medication may take up to 8 weeks to take any effect. Also you may be ellligable for Biologic treatment. Dont be frightened with your work tell them you cant help what is happening with you and your health and mental state

Thank you Wheesy for getting back to me, I’m am feeling quite tearful and fed up, so knowing someone had taken the time to respond does make me feel better. Back on steroids and antibiotics. I am careful to take my medication, as before this started, a couple of years ago, I was a fit 40 year old running nearly 30 miles a week and now most of the time I feel like I have flu/chest infection and in pain (feeling really sorry for myself). I read about people who are worse than me, possible like yourself, and I should feel lucky. My partner is great as he lives with me so witnesses it all, and how terrible I look when it comes in, but work and a feel some of my friends don’t understand I think they see you as moaning all the time about how ill you feel and tend not to offer any support whatsoever. Apparently I don’t have high eosinophils, lung function tests are 97% so classed as fit and well and my consultant dismisses any other treatment. It feels like I have to get worse to the point where I can get further help.

Try not to let anything or anyone getting you down. Sometimes we all think that the world is against us but try o look on the bright side of life. I was as fir as a lop up to retireing, but when I did I cant tell you the amount of set backs I have had I could write a book. At the end of the day I am not in a wheel chair like they said that |I would be. I have learnt how to drive the old 1920's Tram. Please try to look at the brighter side of life, people are there to help us, and to be a little bit calous {I dont mean any offence} If we dont look after ourselves then nobody will help us. Good luck Keep Calm Look after Yourself and above all Stay Safe.

>>> lung function tests are 97% so classed as fit and well and my consultant dismisses any other treatment. It feels like I have to get worse to the point where I can get further help.

Since you are a runner, you may want to look for a private consultant who specializes in runners. You need to know your own lung function baseline, and they need to work from that, not the predicted value. The average person of your age/height does not run 30 miles a week, their "predicted" strategy works for 9 people out of 10 which is good enough for them, but not for you. I have had this conversation with dozens of nurses and doctors. It gets pretty heated sometimes when they say "I do not believe you can have 100% lung function and feel sick".

Things started to improve when I found a private consultant in Leicester who specializes in elite athletes, and he was able to put me on Xolair (took 3 months to approve). My case was a bit easier than yours (since I was on Xolair before), but he did all the tests required for it 10x faster than the NHS would do. The NHS consultants and the GP were dismissive (sounds like your case).

I used to be a marathonner and a nordic ski racer, and my normal lung function is 150% of "predicted"; when I am at 100% I need to be at the hospital. My peak flow diary chart is not even on the "standard" PF NHS chart (theirs only goes up to 700; my numbers are 720-940).

P.S. I have been running in a respirator for the last 15 years. I do not win races like I used to, but it was better than not running. Well, for the last year I have not run at all, respirator or not, due to a never-ending exacerbation, and have gained 20 kgs. Exercise withdrawal is bad, I had to learn to keep myself happy doing other things.

Hi, thank you for this, I have had many discussion about what’s normal for one is not fit another as it appears you have and do understand what you are saying, this is why I get so upset with it all as I don’t know what else to do/say for help. I will look up the consultant at Leicester I have thought about going private but wanted to get as far as I could and go with as much information as possible to avoid additional costs ( although we shouldn’t have to). I’m no marathon runner, just trying to keep fit and helps with stress levels with work, so I also get the withdrawal. I’m the opposite in terms of weight, when this all started I was just under 10st, I’ve just re-covered from under 8st as struggle to keep weight on when I’m ill, and at 5”8 I look pretty much like I’m dug up 😬 really not the look I’m going for 🤣

>>> to avoid additional costs ( although we shouldn’t have to).

This is what my GP told me when I asked for a referral to a private clinic-- she dragged her feet for months, and said that it won't be a good value for money going off the NHS. In practice (in my case at least) it was a great value for money. It costed me about 1K in appointments and tests, and then the consultant prescribed the Xolair via the NHS (since he has a double appointment). Not sure how much money I would put on spending a year struggling with asthma every waking hour. I guess it helped that I knew exactly what to ask for, so the private practice did not have to do much "research".

Funny that, that’s the response I had a couple of weeks ago when I suggested this to my GP, as she is at a loss what to do with me. and why I need to go with as much information as I can and exhaust all options. Thank you, pleased you got sorted as living like this, and compared to others I’m not bad, is awful and I’m not a depressive person I enjoy life and try to make the most of it, I work in a profession where I have learnt to appreciate what I’ve got, but I had to admit this beats me.

It's interesting they give antibiotics every time they give steroids as, very often, they are not needed as many triggers are not infection related and with those that are many will be viral, so antibiotics are not helpful then.

If antibiotics are genuinely needed each time (as in they've done bloods or sputum tests) then obviously yes they should be prescribed but with repeated occurrences they should be investigating why this is happening. If you can, I would ask for them to check out why you're needing so many courses of antibiotics - it could be something as simple as needing a longer course or a particular type of antibiotic. And if these things aren't bacterial infections then at least that's those ruled out.

Low vitamin D levels can mean one finds it harder to fight stuff off. Or maybe it's just a case of, like with many people, getting lots of viral things one after the other after a year of not mixing.

What is your peak flow doing when you're not well? Does it improve if you do it before using reliever inhaler and then again 15 mins after using the reliever inhaler?

Hi, when I was ill earlier in the year I had deteriorated quite badly and the antibiotics I needed, they did help. Occupational health think I had pneumonia ? Not sure why they gave them me this time, although I do feel the same as I did when I was issued with them before. I had all intentions of saying no to them and asking for something different but if I’m honest I was so relieved I did not have to battle/beg for any medication, which I normally have to do, I just took them and ended the call relieved I had something. When I’m well my peak flow can be from 650-690, this is on a good day, now it’s 490, drops to about 450. My oxygen levels are fine in range, always have been, hence the view of no problems, I do present with low blood pressure and low iron levels at times. I am under gastroenterology, linked to breathing problems and lactose/gluten intolerant. I’ll try the vitamin D as I did buy some, but with all the meds I’m, never took them, couldn’t stomach anymore.

Low iron can cause breathlessness so that might be involved at times.

You may have needed all the antibiotics but if one keeps needing them repeatedly then the underlying reason for that needs look at really - but if course it's easier for them to just dish out more.

Totally agree Twinkly, give her a load of tablets to shut her up 🤔. I feel more confident with what to go with when I email the consultant tomorrow and raise a number of questions regarding my care, thank you.

>>>When I’m well my peak flow can be from 650-690, this is on a good day, now it’s >>>490, drops to about 450.

Looks like your PF is variable, i.e. one of the hallmarks for airway hyper-reactivity. Were IgE tests done?

As folks here helped me figure out, one needs to be really sick to have low O2. You are in shape, and your heart appears to have no problem compensating with the faster blood flow to keep the O2 you need.

If a GP does not seem to know what to do, and the suggestions seem to come from you, not from her, sounds like it's time for a specialist referral, or another GP. Ultimately, they have 15 min to "solve" your case, what can one expect, with all of their distractions. It takes me 15 min just to concentrate and start reading a paper.

I think I got 5 minutes today. IgE normal, but just read airway hyper-responsivity, flu-like symptoms that’s me, that’s how I feel, and constantly reported, hence the pain. Been told when I had the pulmonary function test me heart is in great shape, told lungs and heart of an athlete, pity I don’t feel like one. But certainly a bonus 🤣. When I have been ill I have noticed I’ve been exposed to chemicals (work in the house in March) and virus’s (being around others) . I do think I’ve breathed something in the environment this time. There’s a factory near where I live which is been investigated for releasing fibrous material (long story) into the air. I have a dust collector in my garden (no idea what the official name is) and Public Health are involved so I can pinpoint triggers, can’t confirm, but not sure where this leaves me treatment wise or do I have to shut up and put up, which is basically what I’m getting told from medics. Never been a smoker and do not/have not worked with chemicals. Somethings are out of my control. Strangely my 3 kids have all had CoVID in the last couple of weeks, they not great with social distancing or sanitising 🙄😬 and I’ve not caught it, taken 3 PCR’s due to all this to be sure. It’s such a minefield/complex I do appreciate the support.

Just read more on hyper-sensitivity. My consultant ruled this out. My initial trigger was getting a chest infection from a weekend I spent in a hot-tub, I have been checked for any bacterial infection from this but now I’m beginning to think this may not have been explored fully. I did have a CT scan in March and all clear, as they were concerned about my ear pain/hearing. I think my good health in other areas maybe my saving grace. I’m going to raise this tomorrow and along with the VIT D which Twinkley mentioned as I see this has been one of the recommended treatments .

Hi Littlerunner. You have certainly been put through the mill recently, to say the least! I can see why you are fed up.When you speak to your GP ask about increasing your dose of Fostair, and maybe adding in Spivira Respimat.

I was like you ,in that, the first year I was diagnosed I had 4 courses of prednisone. I was then put on Spivira Respimat (initially Braltus). I only needed 1 dose of prednisone for the following two years. I was then put on a different regime with my Fostair- my usual 2 puffs in a morning and two in the evening, up I can now add in an extra 2 doses in the afternoon, if I’m going downhill. So far this year I have escaped the dreaded, but highly effective prednisone.

Also, keep a little mental check of your symptoms and what you have been doing in the 24 /48 hours. Check if the same thing happens next time you do that activity.

I have changed my washing up liquid, soap powder, hairspray and banned my daughter fro wearing her favourite perfume when she comes to visit!

Maybe you too can identify something avoidable. The effects of an irritant do not have to be immediate.

Hi, thank you I will take a look at the Spivira tonight before I email in the morning. I do up my Fostair myself, like you, extra in the morning, evening/dinner but had no guidance I’m just left to my own devices to figure it out. At the moment tightly or wrongly to mange the pain I also take my Ventolin in between. I did ask today about a change of inhaler, I’ve asked my consultant before, and being told there is nothing else I could take. My aunt is a former Asthma nurse, now retired, it was her who told me about Fostair and Montelukast last year, as I was not been offered anything, and I had to ask for this myself.

Thank you everyone for taking the time to respond as I do feel isolated with this and totally lost / frustrated. Without the knowledge advice from others I don’t know where to go, but you have provided me with helpful information I can try, ask for and possibly confirmed that it is highly likely I’m going to have to seek a second opinion. Thank you

Hi

I have eosinophilic asthma and am on all the usual stuff plus Benralizumab.

I have to say that I am surprised that if you are under secondary care and have raised eosinophils that they are not looking at a biologic.

Consultants have many different and varied drugs to help with this kind of asthma but you don’t seem to be on some of the more obvious ones such as Spiriva.. just seems a bit odd.🤔

Maybe question a biologic with your cons but be aware that you have to have certain levels of eosinophils and exacerbations and steroid use to qualify.

Good Luck

😊👍

Thank you. Eosinophils are not higher enough, I am going to ask about Spiriva as Troilus also mentioned this , although found in stomach (PH Probe) during exacerbation, but no diagnosis of eosinophilic gastritis, all clear with gastroscopy. I begin to feel I’m going crazy.

HiIn terms of eosinophilic asthma it is usually diagnosed by a blood test. Not sure about eosinophilic gastritis and where this fits in with the asthma. Maybe ask for a blood test to look at your eos levels as they do go up and down and this would give an idea if they are causing your current problems?

😊

Hi, I’m currently going through pulmonary rehabilitation classes, second one tomorrow. They tell you different ways to breathe when doing every day tasks, remembering is my issue! Anyway, happy to pass on what I know so far if you want? D.

I feel so sorry for you but recognise the symptoms having been there myself. I don’t like taking pred as it makes me feel so rotten and I can’t sleep on it as it makes me wired so you are ill but the only treatment makes you feel worse. Please ask your specialist to consider biologics. They are not a cure but since I’ve been on Xolair it’s kept me off pred which is a bonus and kept me out of hospital. I’m still coughing and wheezing but I recognise I just have toLive with that. I wish you well

Lots of similarities here with my situ. I was running half marathons, then out of the blue adult onset asthma which quickly escalated to sinus disease and nasal polyps, lots of ear congestion, and then a few years later asthma flared to point of 4 courses of steriods in 8 months and symptoms getting worse. My eosinophils were very high though. 2.7 in March and 3.3 last month. I was approved for biologics but this is only when i went to see a specialist in london, my local private consultants just kept passing me back and forth from ENT to respiratory. Anyway long story short - I was diagnosed with severe asthma and then blood test confirmed EGPA which is very rare and over looked. I lost lots of weight and muscle mass, strength abs looked very ill. Now i'm on biologics and 5mg maintenance pred and feeling alive again. keep in mind to get a true eosinophils count your blood should be tested when you are not on prednisolone.

Maybe time to think about quitting Im very similar and had to quit last year the relief from the stress really does help.

Thank you for your replies it is really appreciated, was pretty wiped out yesterday, feel like I’ve beaten up with a headache that is relentless, think I’m coming around today thank goodness and just trying to learn to breathe normally again. EGPA pops up a lot with my symptoms, I am sorry you have this, but at least you are feeling good at the moment 🤞. Your situation does sound a lot like mine. I have read that with the blood count and Prednisone, trouble is they only take my bloods when there is a problem and by then I’m back on steroids, I have no monitoring in between.

Hi, just thought I’d up-date. I have heard I am been referred to the severe asthma clinic for a second opinion. Fingers crossed I’ll get to the bottom of it.

Hi there, a lots been covered so will just add - I treat my Eosinophilic asthma through self injection with Mepolizumab. And many inhailer's. I was a long distance runner when it started and suddenly couldn't get up the stairs! Its not perfect but after 4 years I am now managing to jog. Might be worth a chat with your health providers. Good luck and I was sorry to read your story, Colin (64).

Hi Colin, thanks for your comments, they do really help especially when I start to think I’m going crazy with it all and it’s all in my head, as I can’t understand why the medication is not working. Pleased to hear you are back up exercising, you take care.

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