Confused .com

[pmrdec112014]

I was officially diagnosed with asthma in 1994 so almost 30 years ago having been admitted to hosp with an asthma attack.I had two previously , one just before 18th birthday in 1981 never went to hosp and the second in 1992 when my husband called an ambulance.

I have had numerous different inhalers, plus Spiriva Respimat, courses of oral steroids over the years which has reached a head in past 5 years with 4 courses of steroids in last year alone. I also had to go to hosp for nebuliser as v wheezy some years ago.

My 'asthma' always been triggered by viral/ bacterial infection. Aged 11 I developed the most terrible debilitating hayfever that lasted until had first child at 26 after which the hay-fever went and I seemed to grow into asthma.

In May this year on holiday abroad I had a massive flare up of asthma. I had recently had several different courses of antibiotics for a repeated bowt of sinusitis, which I have had chronic issues with and several operations for over 33 years and also oral steroids as asthma was brewing again.

My symptoms always begin following an infection which can be as v mild sore throat.

I start coughing at night feel there is a brick in my chest that I am trying to breath through and feel puffed out in the day for 7 to 10 days before I cant cope any more and am prescribed steroids. Obviously I am getting through ventolin day and night.

I also have bronchiectasis diagnosed in 2017 and when well I don't cough at all and have very little if any sputum. I am under the local community respiratory team too who always advise re steroids.

The pattern is always the same.

On holiday the Sunday night was the worst ever in my life and I actually thought I could expire. I felt so ill but I didn't want to be left in a strange hospital so I didn't go anywhere and hoped for the best. By this time I was actually sick and tired of puffing on inhalers taking steroids etc etc so at that point I actually didn't care.

In the morning I started more antibiotics and along with the emergency steroids I had started the day before I slowly improved.

I had an emergency appt with my local chest physician soon after who changed my inhaler again to the highest dose possi e and referred me to a specialist centre. While I was waiting for the consultation I had and hour and a half's worth of different breathing tests. I am unaware of the results.

Now the fun starts.

I have had many blood tests at the first appt and apart from Feno being 29 on a second trip up there as had been feeling unwell but not as bad as I had been on other occasions all my bloods came back normal.

The nurse I spoke to says there is 'no evidence of asthma'!

I have been on oral steroids for 9 years next month for another condition starting at 15 mgs and slowly over the years with step ups and step downs currently on 6 mgs.

I have seen GP's and several different consultants over the years so is she telling me they all treated me inappropriately and if its not asthma what the heck is wrong.

Also recently I inadvertently lay on a feather pillow at a friend's house and literally with in 5 mins I was wheezing ( and I don't often wheeze) my chest went really tight and I coughed all night for 3 nights despite removing the pillow to the end of the bed and finally the 3rd night out of the room. The fourth night I was fine! This happened once before years ago and hence I had forgotten until this latest episode as obviously avoided all things feather since.

The doctor( reg) at top London hosp is going to take case to the other consultants and get back to me with a plan.

At initial consultation she was talking about biologics but the nurse said that won't be happening.

Any thoughts as I am totally flummoxed!

Thank you in advance.

[djbctla]

Hi pmdec112014

It will b interesting to have the results from your London Consultant and his colleagues, do wait for them before taking any other action or advice.

BERNARDINE

[Poobah]

It can be so disheartening when any healthcare professional drops a throw away comment about a one off test result. FENO testing should not be taken in isolation, just as a one off test or without reference to a history of symptoms and treatment. This link may help understand how professionals should consider test results, niox.com/en-gb/

My respiratory team have changed over time and so has their ideas about asthma. It sometimes feels that every consultant I see has a different view, even down to how to interpret tests results and what treatments they favour. I've had a couple of battles with their ideas, whereas, some have proved very helpful in modifying my treatment effectively. It's like playing Russian roulette at times. One thing I know for sure and that's, no one else knows my asthma better than me.

It sounds like your personal experience has been one of severe asthma but are now being made to feel that it's not that serious, despite the intensive treatments over the years. Whether a doctor or nurse calls it severe asthma or difficult asthma or something else, stepping up your treatment in order for you to get control of your symptoms on a more long term basis is paramount.

This is a link to a very good scheme to target biologics to severe asthma patients and within the attached there's a link, "Is your asthma under control" which is designed to help the patient have an informed conversation with their doctor. england.nhs.uk/aac/what-we-...

I would also consider having a chat with the Asthma UK nurses on 0300 222 5800 (Mon to Fri, 9 to 5). They're very knowledgeable and helpful.

Even if the specialist decides that biologics are not the next step in your treatment right now, definitely push for more targeted treatment for your respiratory disease and ask about your options for getting control of your severe symptoms. Also ask what your phenotype is and how they see treatment being designed around that. I've found it helpful to know my phenotype and what treatments suit it best. You may need a pen and paper, but get all the information you need.

All the best.

[pmrdec112014 in reply to Poobah]

An informative comment. Thank you so much. I have seen the information related to the links, and completed the questionnaire before. That is what has astounded me as the label difficult asthma as been attached to my records for a long time!

I will await further contact from Dr and discuss all these points in due course.

[Lysistrata Administrator Community Ambassador]

I agree with Poobah especially re FENO. I would also say that blood tests alone are not enough to rule out asthma, if that was what the nurse was going on. Some people with asthma do have raised levels of a type of blood cell called eosinophils, but that's one type of asthma - not having raised eosinophils doesn't rule out asthma! It would mean you can't get some biologics but with the latest one, tezepelumab (Tezspire), the eosinophils aren't required and they should be looking at the bigger picture. They should be looking at the bigger picture anyway for diagnosis. I hope you get further with the specialist centre.

Also - if you've been on oral steroids for 9 years, they reduce eosinophils in the blood so you'd likely have reduced numbers anyway - doesn't mean you can't still have asthma, even the type with raised eosinophils.

[pmrdec112014]

Thank you. My thinking regarding long term steroids. I am not sure if the nurse knew that!

[Patk1]

Feno measures inflammation in lungs.normal is 15 or below.If you've allergies, are u taking antihistamines?

If Yr asthma is triggered by infections( as most of us are).I'd be truing to avoid viruses as much as u can,especially I'm winter whn indoors more.i use hangel,frequently wash hands,& wear mask in crowded places and if any family have a cold x

[Patk1 in reply to Patk1]

Ps are u using an aerosure spacer with inhalers? Have u had inhaler technique checked x

[pmrdec112014 in reply to Patk1]

Yes I always have asthma review at gp every year and technique always checked and it is good! Many thanks

[pmrdec112014 in reply to Patk1]

Yes wear a mask on planes, trains and underground and apply hand hygiene appropriately.It's all a conundrum atm!

[Sars28]

I was like this every time I got a cold , now have been diagnosed with esophillic asthma and have biologics fasenera hope you get answers .

[ellamental]

Sometimes nurses don't know the whole story as Poobah said. I am exactly the same with feathers! It sounds like asthma to me and very unlikely that ALL the previous Drs got it wrong as you said. I am so glad you have a London Consultant looking into this. I think you can look at the blood test results over the years (if you have patient access and download the PDF of all your information) and if it points towards eosinophilic asthma you may well be able to get the biologics injection. Like Sars28 I am on Fasenera and it has been life changing... I was on prednisolone for many years too and don't need them now unless I get a chest infection. Hope things get better for you soon.

[pmrdec112014 in reply to ellamental]

I am 100 per cent know its asthma but I think because of the long term steroids for another condition it will be proving it due to bloods being'normal'.

[ellamental]

Oh I see, let us know how you get on with the consultant and his discussions with other Drs.