Taken off Inhalers

[ck101]

Ok, met the new Plumo last week, have to say it didn’t go as expected.

Without question I have had chronic bronchitis type symptoms now for many years and feel pretty crap most of the time. Wheeze, inability to get a deep breath, sense breathing is not good, morning cough and phlegm.

My MEF25-75 is now down to the 50’s and my FEV1/FVC is 65 it used to be 74. To anyone else this is obstruction. However the FEV1 is 100%. So to the Pulmo there’s no problem.

So after taking a very long history he tells me to stop all inhalers. That’s it and good luck. Nothing about the significant decrease in my numbers, nothing about my current symptoms. How I feel etc.

All in all a little confused & puzzled about where to go from here. You wait months to get to see these people, in my case 19 years and find the outcome underwhelming.

[bryan45735]

Hi ck like everyone tells me numbers don't mean nothing its how you feels I've heard it from top to bottom its ANXIETY its all in your head

[ck101 in reply to bryan45735]

Hello Bryan, how are you getting on. Did you ever end up being prescribed inhalers and how is your physio going?

[bryan45735 in reply to ck101]

Hi ck1 sorry for late reply, I've also been reading your posts with interest firstly answer to your questions im still not on any inhaler never have and I hope I never will, ive had a rough time the last 3 weeks with my health a anxiety and also had a tickly cough that's went into constant cough so my anxiety got the better of me and it felt like the end of the world ringing doctor every day im convinced it was a chest infection or bronchitis doctor listened to lungs all clea, yellow phlegm which has cleared up now spoke to my copd nurse she isn't concerned she says you just have mild obstruction yes I no I have mild obstruction and she says like your doctors ect it will never get worse WELL I DONT BELEIVE THAT FOR ONE MINUTE I too have a hiatus hernia 5cm it may have something to do with it as for dysfunctional breathing I will be having my 3rd session in two weeks time I guess in some degree it is helping with the training but very hard but I havant felt right for 2 years every single day and all I get told is its ANXIETY just because I have anxiety its easy for the doctors to say that unfortunately for me now it's turned into OCD with my breathing im constantly thinking of it infact 24/7 again that's another possibility to how I feel

[Patk1 in reply to bryan45735]

So sorry yr feeling so bad bryan45735It must be incredibly hard,feeling as u do.

Viral coughs can linger for weeks.im glad yr breathing sessions r helping already.

Have u talked to gp re hiatus hernia.also Mindsmatter ( contact details online) are v helpful,offering varios mental health counselling,cbt etc

[ck101 in reply to bryan45735]

Yep it’s tough going Bryan, good and bad days I’m afraid to say. I’m going to get the bed up on blocks for a month to see if it does anything.

[Oshgosh]

That’s awful.

[peege]

That is pretty shocking ck101.

[CDPO16]

Words fail me ck101

[ck101]

Yes Peege, after a week off them I took a puff of Fostair this afternoon and immediately felt an improvement. It doesn’t really matter what he says as GP’s will prescribe most things if you make a reasonable case (other than benzos) in my experience. It’s not like inhalers have serious side effects.

[Karenanne61 in reply to ck101]

I think some inhalers can negatively affect your heart rate so please be wary of taking them unnecessarily.

[ck101 in reply to Karenanne61]

Thanks Karenanne, yes I notice this more so in my older years. When I was in my 30’s I had no adverse symptoms, now I feel the heart drive harder after even one puff of Fostair.

[Patk1]

Perhaps u really donf have lung or airways disease.it does sounnd like drs have been telling u this for years.Do u suffer with anxiety? As it can affect your breathing,along with the hiatus hernia.

Did u not talk to the specialist?

It sounds like u had all the tests done so he had a clear concise picture,along with yr detailed history.he wouldnt tell u to stop puffers if there was anything wrong.he in his wisdom as the specialist obviously thinks your problem isnt related to your lungs.

Id tackle yr hiatus hernia and reflux and see what u can do to help yrself.

Do u exerrcise x

[ck101]

Thanks for responding Patk, you seem to have read my previous posts also 👍.

You are correct and I have spiralled into dysfunctional breathing patterns from time to time over the years where anxiety played a key role.

No doubt this is an aspect to be considered not just for me but also for the consultant on the other side of the table who’s accustomed to seeing those with advanced disease.

The presence of a level of anxiety nearly detracts from ones ability to make a case regarding symptoms.

I do excercise but it’s binary, I’m either going all out for a few months or doing nothing for 6.

Thanks for the steer and I’ll pursue both excercise and a treatment plan for reflux in an attempt to improve my situation.

[Patk1 in reply to ck101]

I did look at yr posts on here before replying.i didnt know u had probs with anxiety.health anxiety is very real.as is the hiatus hernia - it very likely is causing/contributing to yr symptoms.i would talk to yr dr for advice/ treatment for it.it could help yr symptoms be managed more effectively.i do hope so.

[ck101]

It’s a chicken and egg thing this health anxiety and dysfunctional breathing disorder which thankfully I’m not experiencing currently. Study’s I have seen connect mild COPD with this disorder. I am taking an SSRI which helps considerably.

[Patk1 in reply to ck101]

Im glad the medication helps.

[Patk1 in reply to Patk1]

Woops! Sent b4 finished.can u access help with health anxiety + that may help with breathing difficulties?i certainly hope treatment for H hernia improves yr symptoms

[B0xermad]

Hi ck101,why is it the consultants always differ on opinions and you end up bearing the brunt of the outcome there's no consistency with them and it's very unfair. I hope you take this back to your doctor so you are not floundering until the next consultation.

[Tia4209]

Are you still considered as having mild COPD if your Fev1/ FVC ratio was 65% ? Or did the Pulmo say you did not have COPD. It is good news that everything has come back as normal except the ratio but even mild COPD can cause symptoms so it is strange the consultant took you off your inhalers.

[ck101 in reply to Tia4209]

I agree re mild COPD however he did mention the LLN which is 66 and I hit 67.5 post BD, this coupled with the FEV1 being over 100 got him to the point he arrived at. I'm pretty confused with all this tbh and will most likely just park it up in the knowledge I'm not going to keel over anytime soon. Others would be chuffed to get a diagnosis like this but when you don't feel 100% it's a pain.Having tried a fair few inhalers I feel there's no med out there thats going to make me feel as I did before all this started.I will stick with 1 x Fostair and 1 x Becotide x 2 a day which does make me feel a good bit better despite what the Pulmo says. I'm certain my GP will be ok with this.

[bryan45735]

I still don't understand figures why is it fev1/fvc goes down and not fev1

[ck101 in reply to bryan45735]

You ask why the FEV1 doesn't go down, well it does in most with COPD. In advanced disease the FVC generally goes down also. It's very unusual to have COPD with a preserved FEV1. In my case I have reports from 1995 which show an FEV1 at a similar level to 2015 but not to today.

To get into a bit more detail;

FEV1 measures the amount of air exhaled in one second, it's a sensitive measure of the elasticity and therefore closing volume of the airways. In obstructive disease this value falls, ie. you get less than 70% of all the air in your lung out in the first second. They then compare this value in litres against the total amount of air you can exhale or FVC and work out the ratio between the two. So if you divide the FEV1 by the FVC and end up with ratio = FEV1/FVC.

When the FEV1 is low the ratio is lower and when its high or the FVC itself is low (as in restrictive disease) it's higher. Hope my uneducated parlance explains it.

Have a look at this video which covers it all.....you'll be an expert soon Bryan

youtu.be/YwcNbVnHNAo(Not working as expected?)

[Neville33]

Have you had a sputum done to grow a culture to make sure you haven’t picked up another bacteria..request a low density CT scan to see what’s going on ..this should be done yearly..your scores have dropped..I would want to no why?

[PW_R]

Hi CK, late to the party. How are you now if your don’t mind me asking? I’m no where near a copd diagnosis in terms of my numbers but have full blown chronic bronchitis, triggered by a cold 7 months ago. Nothing seems to help & i am wheezing, producing mucus & tired all the time. I guess in about 5 years I’ll have a diagnosis of copd as the numbers will slowly drop as my lungs become worse & worse. Something to look forward eh eh.