Rant/ advice please

[HoppyNurse]

I was diagnosed in may this year based on FeNo testing (I blew 98!) and raised eosinophils (up to 4.8!). I’ve always had bouts of tight coughs that would be debilitating and last for anything up to 6 weeks! Started on relvar inhalers and 5 weeks later FeNo reduced to 11. Fast forward to October this year - 16th to be exact - out of the blue really tight cough, felt I couldn’t get air down into my lungs. Called GP he prescribed steriods and antibiotics. 2 days later at work 10 hours into my 12 hour shift I was admitted to A&E and given nebulisers- no wheeze but very tight - no air entry ont he bases of lungs. Admitted and received x2 magnesium Bolus 24 hours apart all good and discharged home after 5 days. Fast forward to now - I’ve had another 3 admissions since then all getting longer and worse! I have received magnesium on all admissions, which has made all the difference. The most recent admission ( I had sent the respiratory team in the morning and told them I didn’t feel right, my FeNo was 43 and they said to start pred again and didn’t feel i needed admission ) - been home 3 days was the worst, was told by a F1, on a night shift who’s had not even read my notes, I was faking it and just breathing shallow. A consultant said my chest was clear there was no wheeze - no one has ever heard a wheeze on my chest! And another doctor who said it wasn’t asthma and they were stopping all treatments! Discharged home to await specialist clinic at Guys hospital in 15 days.

I have never wheezed, I get a tight feeling across my chest, feel like I can’t get air in deep enough or blow it out so the top of my lungs feel like they are over inflated and stuck to my chest wall. My sats are usually stable - which is what a lot of people look at I have noticed!

I suppose I am wondering if anyone else has these sort of symptoms and if there is any advice?

[Ayeup]

Not as severe as you have been but diagnosed with eosinophilic asthma with high FENO etc and waiting to go to Severe asthma clinic and keep getting those tight feelings in my lungs which last minutes and then thankfully pass . It's a new feeling and wondering how it will pan out ie whether it will start to last longer etc.

[Matman]

Given the - apparent - association of magnesium with your symptom severity reduction, have you asked your doc about a blood test for your general magnesium levels?

I appreciate that your hospital magnesium treatment is very different from supplementation with (say) magnesium citrate by mouth, but it might be that some folk have a genuine need for oral supplementation.

I suffer from eosinophilic asthma, and I supplement with 300mg Mag Citrate at bedtime. I believe it helps.

[Tugun]

Hi,

You've been on Relvar. Were you also given a quick acting reliever such as Ventolin (salbutamol) or Bricanyl? 15 days is too long to wait for a consultant if you are off all meds. I am not a doctor but further testing is always helpful. However there is such a thing as "silent asthma". My asthma went from wheezy asthma to silent asthma. This means that you can't hear a wheeze and most doctors who listen to my chest would say it is clear. But it's not. It's tight and hard to breathe. Ventolin immediately releases that tightness and gives me clear breathing. At its worse (when I had a severe chest infection) I could hardly breathe in enough to get the Ventolin into my chest. Nearly died at that point but managed to gradually open my lungs with enough Ventolin so that I recovered enough to call the ambulance. Even then I only had enough breathe for one word at a time. If you don't have a quick acting reliever you need one. Still see the consultant but see another doctor asap and explain your symptoms and ambulance visits.

[HoppyNurse in reply to Tugun]

I am now on fostair 200/6 as when I’m unwell I struggle to get the relvar in, and I have salbutamol . The Salbutamol works enough that I can get my airways open and get help, but doesn’t last. I was initially supposed to see the specialist in the day after discharge but was cancelled as he was at a conference and my local team didn’t want me to see a registrar. To be honest I was no where well enough to make the journey then, and I’m not much better now. I’m going to see my GP tomorrow as after being told it’s not asthma etc during my last admission I’m not keen to go back to my local (I work there which is bad enough!). I also will call the asthma nurses at Guys and ask their advice. My peak flow is currently hovering around 60% which I know will only get worse over the next 2 weeks.

[Tugun]

Hi,

How long does the salbutamol last?

[HoppyNurse in reply to Tugun]

Currently 3-4 hours, initially on discharge was 6 hours. I know that I am hovering on the borderline of needing to go back in, I usually head in when I’m hitting 2 hourly. Last time I didn’t and when I went in I was speaking single words, I do not want to go through that again!

[Tugun]

Totally understand not wanting to go through that. I'm glad you're taking it when needed. I wish you luck with your doctor and hopefully they can work out what is happening with your lungs and the best treatment. Let us know how it goes.

[Junglechicken]

My asthma doesn’t always follow the “rules”. I’ve had bad attacks with and without a wheeze. Attacks with a low and high peak flow. I struggle with my inhale and exhale. My oxygen stats are perfect. The only thing that always happens is a sky high heart rate that can go on for hours. It calms with salbutamol. I have one GP whom I now refused to see who doesn’t believe I have asthma but anxiety attacks that cause coughing and mucus?????. Bear in mind as a child I was hospitalised once a month with asthma, had my asthma confirmed by respiratory specialists and my mum also has the condition. Sometimes it’s so hard to get the treatment that you know you need. I had to fight tooth and nail over the summer to get treatment. I saw a specialist who really wasn’t sure what was going on only that it was asthma. It was the problems with the exhale and inhale that was “interesting”. I’m thinking that my heart is really working well as it picks up its own workload and that of my lungs during an attack, hence the good stats.

[HoppyNurse in reply to Junglechicken]

I think it’s something that I have had for years at least 2 1/2 years although only recently diagnosed and therefore my body copes pretty well hence normal sats but my heart rate I usually high up to 150

[Junglechicken in reply to HoppyNurse]

Snap re heart rate. It’s a horrible sensation. Keep fighting to get the treatment that you need. It’s incredibly hard believe me I know. I had an appointment with my specialist on a day were I felt so exhausted from just breathing and recovering from pneumonia, I struggled to stand. I knew that this appointment was a way to get well again and I’d had to fight to get to the appointment. I asked my dad to drive me there, fell asleep in the waiting room, saw the specialist, got back in the car and promptly fell asleep again. I did get the treatment I needed and it took about 2 months and a cocktail of 5 different asthma drugs for me to start to feel better. It took every once of strength to get me there but everyone of us has an incredible inner strength that you don’t know you have until you need it

[HoppyNurse]

Thanks for all the replies. I was admitted again yesterday (no. 5 in 2 months) same old B2B nebs and mag. Then nebs 3-4 hourly.

I got to see the specialist today at guys, my FeNo is still elevated but they don’t want me to take any more steriods as I’ve had far to many in the last 8 weeks. They’ve said it’s eosinophilic asthma, and they are putting me forward for the injections. So just got to sit and wait to hear from them but it’s a small step in the right direction

[Coastwalker in reply to HoppyNurse]

I have Private Messaged you HoppyNurse, (hope you don’t mind.)