Husband still suffering eosinophilic asthma mentioned but not yet diagnosed.

[Tinytune]

Hi, my husband has been ill since 27th December, he has had hospital visits and turned away saying he has sinusitis, a cold etc... then was admitted at the end of January. They still haven't diagnosed asthma but said it is likely eosinophilic asthma due to extremely high eosinophils.

His symptoms are no sense of smell or taste, extreme tiredness, wheeze, very short of breath, constantly sounds like his nose is blocked, nose bleeds.

He visits respiratory at the hospital every fortnight and last Friday actually saw the consultant who added montelukast to his medications and increased his fostair 200/6 from 2 puffs twice a day (which we thought was the maximum) to 2 puffs 4 times a day. He is improving on this increase but each time drugs are changed or increased they seem to work for a few weeks then his peak flow drops rapidly.

He is seeing ENT next week as asthma nurse wants answers from them regarding the loss of taste and smell.

Does this all sound like asthma? They say they can't do the breathing tests until he is well enough to do them and that will diagnose. He is booked in for breathing tests again on 31st May so hopefully he is well enough to do them. He is worrying that there is something sinister wrong with his sinus problems going on for so long. He is only able to work part time as by the afternoon he can't stay awake. Luckily work are really supportive.

Thank you in advance.

[EmmaF91 Community Ambassador]

Hi

The nosebleeds, blocked nose and lack of taste/smell sounds like it may be coming from nasal polyps. If he’s getting a wheeze, shortness of breath, coughing and a feeling of tightness in his chest (all of which are worse at night) then that can be asthma. These 2 can be commonly seen together! The fatigue can be because he’s been uncontrolled so having to work ‘overtime’ if he is asthmatic (Plus from night wake ups if he has them). Eosinophilic asthma just describes what is causing his asthma, so helps to suggests what treatment may work best for him.

Finding the right set of meds are a pain as it can take time because everyone is different. However there are still options there which he sounds like he hasn’t tried yet.

Being ‘well’ enough for Lung function tests (which I assume he’s waiting for) can be difficult, but the main thing is to not feel like he has a cold/flu/infection. If it helps I’ve done LFTs whilst quite symptomatic with my asthma - it wasn’t fun but it was doable and results were accepted. Equally things like spirometry, peak flow and FeNO/NiOx can all be done when asthmatic (I’ve been in local hosps where there’s have been checked as an inpatient 1 day after admission).

As a side note has he tried any steroid tablets for short term relieve (5-7days)?

I hope that helps

[Tinytune in reply to EmmaF91]

Thank you very much for the reply. Yes he has had many courses of steroids, initially it was 8 tablets for 5 days, he had 5 courses of them. Last month he had 8 tablets for 14 days and last week another 5 days course.

He had had the FeNO rest a couple of times and keeps a peak for chart daily.

Initially he had a cough that was that severe he developed cough syncope and has had to surrender his driving licence for 6 months.

He is (was) a runner and he lead running groups, sadly now he can run for a minute before being breathless.

When he is having an attack his chest goes silent, when he was at his worst the paramedic said he had a silent chest and he had a couple of adrenalin injections. He wss rushed to resus and I was warned he was extremely ill. Last week whilst on holiday he ended up seeing a local Dr who said his chest was very quiet. It seems that when his wheeze stops he is actually quite poorly so when he had the wheeze now I am relieved as I can hear he is breathing.

Sorry to go on, I am trying to explain how things are.

Again, thank you

[EmmaF91 Community Ambassador in reply to Tinytune]

So that definitely sounds like he does have asthma!

Having been there a lot myself silent chest is not a good place to be (I have eosinophilic and atopic severe asthma 😅). So yes the loss of wheeze and cough (after it being bad) is not a good sign (it’s one of my big indicators to get more help... that and my PF!). On the right meds he should end up asymptomatic but in the good way 😉. The hardest part is usually recognising issues and seeking help sooner as the quicker you go in the quicker you get out 😉.

If he does have polyps that may explain why he’s having such difficulty gaining back control.

Good luck to him (and you). Wishing him well

[Tinytune in reply to EmmaF91]

Thank you, it is the lack of wheeze that is really worrying me, he seems to go quiet and sits there looking like he is simply reflecting. We were sent home from hospital so many times in January and told he was fine. He carried of coughing and when he went quiet we thought he was getting better but had no idea how seriously ill he was. I'm sorry you suffer with this as well, it really is horrendous to witness. He has spent many nights sat on the edge of the bed very quietly, I think we need to realise that this is not a good sign.

There is definitely something not right in his nose, he sounds dreadful and his nose bleeds and he hasn't smelt a thing for a couple of months now.

We will get there, thank you again, it really helps to speak to others

[EmmaF91 Community Ambassador in reply to Tinytune]

If he gets issues in a&e, tell the doc he has lost his wheeze and often is in silent chest at that point (I have it written on a piece of paper I carry around as it usually alone in a&e). A history of silent chest normally prompts them to look for it so to say. Plus now he’s unofficial diagnosed asthmatic you lead with that. You tell them he is asthmatic and can end up in silent chest. That should get him more help

Does he have an asthma plan? And if yes does he follow it? Cause that the best way to spot trouble brewing.

[Tinytune in reply to EmmaF91]

I hadn't ever heard 'silent chest' before. I just assumed asthma was wheezing and loud breathlessness. The paramedic scared me in January and said if I left the call an hour later it could be a very different story. Again last week the Dr said he had a quiet chest, I just cried as it scared us again. Adding the montelukast seems to have helped so hopefully it continues to.

He does have an asthma plan and follows it rigidly, he is a rule follower.

At the moment his sinus issue is scaring him as he has read all sorts about what it could be, at least he is at ent next week and in January he did have a camera up his nose and they didn't see anything, having said that they couldn't get the camera up one side so said they needed a ct scan, which never happened.

Take care, Andrea

[EmmaF91 Community Ambassador in reply to Tinytune]

Take it as a learning curve. You now both know what to look for (ie for him new wheezing/other symptoms means GP ASAP, lack of wheeze/cough despite tightness and SoB and prev issues means a&e) which puts him in a safer position as usually the people who become statistics are the ones who don’t recognised the warning signs and so don’t get help in time... the others are the ones who are so severe the medications don’t help or they spiral too quickly...

Finding the right med regime will help the asthma, and from the sounds of it things are starting to improve for him. I am glad he follows his plan, hopefully especially the part of when/where to seek help!

Ah - it’s never good to ask Dr Google his advice before a diagnosis... he likes to panic everyone with worse case scenario (ie you have the plague when actually you just have a cold 😉). Try and tell him not to borrow trouble and wait and see what the docs actually diagnoses before involving Dr Google again

It’s worth chasing the CT scan if they said they wanted one esp if nasal cavity was blocked. Sometimes things get missed and forgotten about in the grand scheme of things, alternatively he may just be on a waiting list for one and not know it... so worth ringing to find out!

X

[Tinytune in reply to EmmaF91]

Dr Google really isn't helpful is he, it's sometimes hard not to consult with him but yes we will wait and see what the professionals have to say.

I will chase the CT scan at the appointment (I know I sound bossy but he doesn't like 'putting anyone out'). The asthma nurse had to chase up ENT actually seeing him as it appears he was forgotten about but at least he will be seen now.

It seems that the medications have thus far worked for a while and then needed changing. He was a very healthy, active 48 yr old until a few months ago so it will take time to get to the bottom of x

[madonbrew]

Hi,just a quick message...I think the consultant is allowed to prescribe that dose of fostair....it's unlicensed but they must consider it worth trying.

I'm on the same amount...it makes my eyes blurry though and I was very shakey!

[Tinytune in reply to madonbrew]

Thank you for the message, he is very shaky and we think it is because of the fostair and blue inhalers, he hasn't said he has blurry vision.

[Hidden]

Nose bleeds and lack of sense of taste and smell definitely doesnt sound like asthma symptoms. During a viral infection or asthma flair up then you might experience this but they are not a general symptom of asthma.

[Tinytune in reply to Hidden]

From what I have read nasal polyps are linked to asthma, his loss of smell started when he was in hospital in January and it hasn't returned. The nose bleeds are more recent but they are a symptom of nasal polyps. We are at ent next week so I hope he gets some answers.

[Kristy1985 in reply to Tinytune]

Prayers for you and your family.

[Kristy1985]

Hi! I am so sorry to hear about your husband. It is frustrating that they won’t do breathing test until conditions have improved (they told me the same thing). The high esonophils can be an issue( mine were normal) so he said allergic asthma is not too likely. Perhaps he needs a burst of prednisone? Seeing an ENT isn’t a bad idea! Keep seeing doctors and pursuing answers! ❤️

[Tinytune in reply to Kristy1985]

Hi, He has had allergic asthma ruled out, his allergy tests came back all ok apart from dust mites and the nurse said that is usually high in most people. He has had a lot of prednisolone, short and long courses. Thank you for your thoughts.

[Carus]

Hi,

That’s a horrible situation your husband and you are in. I also have high eosinophils and lost my sense of smell and taste for more than a year - for a second time. The first time my doctor said to take zinc supplements. This last time I was diagnosed with nasal polyps (along with my asthma.) Recently I was on vacation and my smell and taste returned. I have been on Fostair, Spiriva and Dynamist ( for my nose) for a few months. The Dynamist is pretty strong stuff and initially made my nose a bit bloody but that seems to have stopped. I take it for 20 days out the month. I don’t know if this medicine is the reason I can smell again but it is so amazing to be able to after more than a year. I hope you find some answers!

[Tinytune in reply to Carus]

Hi, thank you for the reply. It is interesting that you mentioned zinc supplements as I had read about them. He has rhinocort for his nose but has had it for 3 months and it has done nothing. We are at ENT tomorrow so will mention dynamist to them. You don't realise how important your sense of smell is until it has gone. He said he can almost cope with the loss of taste but smell is worrying. I need to make sure there are no strong perfumes, smoke, pollen smells etc.. wherever we go when we are together.

Again thank you

[Tinytune]

I just wanted to update after the ent appointment yesterday. It turns out he has paralysed vocal cords and needs a ct scan. The consultant said no wonder he is struggling so much as that makes breathing difficult. So with that and the raised eosinophils he is exhausted just trying to breath. They didn't seem worried about his loss of taste and smell hit said the ct will check the nose.

[beech in reply to Tinytune]

Thanks for the update. The paralysed vocal chords isn’t something I’d read about, so shows there really are some odd things that cause breathing problems. I’m sorry it’s taken so long to get towards a diagnosis, your poor husband has been through an awful time over these months, and you too with all the worry.

I hope he can get some help towards sorting things out and feeling better before too long.