Advice / support

[Davenpos]

Hi i am Sonya

Severe brittle asthmatic with severe ILO and bronchomalasia

was on ECMO 2016

been ventilated many times

I have been on all the biologics of which havent worked back on Dupixient with 15mg pred daily , reduced over 8 years from 40 mg

My pheno is never above 250 ...

I have had this persistent cough for over 6 months , tickly barking productive hoarse etc , but i never bring up mucus usually and now i have lots..

Not sleeping as all i do is cough even on a movement sets it off , the pressure of coughing is producing nose bleeds , absence seizures, bringing on an attack ..

i am a shadow of myself feel shit look shit and yet i have to wait this long to get a ct scan

i just know this is totally different from my normal asthma symptoms

depressed Sonya

[peege]

Has anyone simply listened to your lungs to check for infection? If found the gp can send a sample to get tested to show what is growing and the correct antibiotic (or antifungal?) to treat it with. So sorry you're suffering and if you already know the above. You could call the helpline on 0300 222 5800 uk office hours or the WhatsApp number above. All the best, P

[Patk1]

U really need a ct scan.many of us are having to be very proactive to access help we need.u can read my bio - I've severe eosinophilliac asthma,ilo,severe tracheo bronchomalacia & severe edac along with other probs so I can empathise with you.have u had lung physio to help cope with airway closures/ collapses? Ru on niv- home ventilation.

Peege is right,u should get an urgent appointment with gp - u know yr symptoms&changes best x

[Gwalltarian]

Hi Sonya, I agree with the above. What I am about to suggest sounds trivial in the face of all your problems and medications. I tried an over the counter tonic with iron which had an amazing effect of clearing a chest infection with productive cough - within a day. I used to get a cold a few times a year and invariably it developed into a chest infection with a productive cough that I needed antibiotics to clear. When I eventually tried the tonic it not only cleared it but I haven’t had a cold since. I take the tonic from time to time and I also take vitamin D daily . I take Montelukast and Fexofenadine for my asthma with ventolin as needed and occasional Flixotide.

[Itswonderful]

I am so sorry to hear you are feeling so rotten. So many people have this unrelenting cough. The only thing that has made a noticeable difference to me is Benylin Cough and Mucous Nighttime. In the UK it is an over- the-counter medicine but available only from pharmacies. I have to reiterate that it helped me but may not be suitable for you as you have other conditions so you will need to speak to the pharmacist or GP surgery about it first. I believe the cough that has been plaguing me on and off ( mostly on) for a few years is caused by post nasal drip from a sub clinical sinus infection that has never been fully treated.

[Poobah]

Hi Sonya - I wonder if you're a victim of the postcode lottery in regards to the wait for the CT scan or something has gone awry? Our local radiology services have really improved waiting times and I was surprised how quickly I got a CT scan and a follow up a couple of months later, to check that lung nodules hadn't changed. My sister had her CT scan after a few days of the hospital respiratory referral.

I would follow up with the referring doctor, especially given the complex nature of your case. Admin errors do happen and no system is perfect, a chivvying patient can expedite things.

And I can recommend the Asthma & Lung UK helpline nurses, if you need to talk about any concerns, including how to better access services.

All the best.

[Patk1]

Hello Sonya.how ru feeling now? Hope yr ct alphas come through.if not,I'd ring drs,make sure referral was done.if so,perhaps ring ct dept - make sure yr on waiting list+timescale x