Darren (Rallyingman)

[Hogrider]

Hi just like to introduce myself , but first of all thanks for accepting me.

I'am 59 year old and got medically retired from royal mail nearly 3 years ago with y 39 yrs service . I was always fit and healthy and caught the covid virus , was told of this December 24th 2020, so merry xmas to me and the family.

After suffering into January 2021 with a cough i couldn't shake off , i had to book in with the doctor. I was asked why i didn't come sooner by him . So i told him i couldn't get in for an appointment !!!

After an examination, he told me i had pneumonia which had further resided into pnemonitus, I couldn't say i was shocked because of the coughing and sleepless nights. Then sent to cardiology for a lung spirometry test, this confirmed that i was just borderline with COPD. After seeing a specialist i was placed on Beclamethasone inhaler and Salamol . That beclamethasone ( brown inhaler) i just couldnt stomach.. It didnt seem to work for me . So i got in touch with my Gp again and the asthma nurse and discussed this . I was then placed on Fostair 100/6, was ok at first , then i needed a bigger dose.

Doctors again and he upped the dose to 200/6 and i felt a little better , could breath better during the day .

Got a generic letter from the Doctors stating that Fostair was being changed to Luforbec as it was apparently cheaper for the NHS.

Apologies for waffling but his is what im getting down to. After changing to Luforbec in Sept 2024, its been PROBLEM AFTER PROBLEM ... I was then placed on Tiotrpium bromide which is on repeat and seems to help

The lurfobec .I could not inhale it properly through my spacer without coughing and spluttering , this also i believe has blocked my sinuses and contributed to fullness in my right ear and ongoing infections in both ears and eyes . I'am suffering with billateral ear infections at the moment.

I was referred 8th Jan this year by my Gp and told to ring if i didn't hear by yesterday 25th march . Rang ENT this morning only to be told i'm on the waiting list but its still 12 months behind.They told me to ring my doctors again to see if he could get me in quicker

Enough is enough , waking up with a glue type ear every morning, been suffering from tinitus since 2007 and menieres disease.

Rang the Gp this morning and got in straight way to see him , back on the Gentamacin antibiotics for the 4th time, now for 10 days , told me to ring back and he said he will get me in to ENT within a few days . I requested that he put be back on Fostair and he did this morning ..

All this i believe has been caused by Luforebec , the cheaper version which costs the NHS half the price of Fostair .

Bet anyone who reads this ,thinks i'm making it up... I'm so annoyed that this caused me to suffer because of cutbacks .

I'm sure there is alot of you out there that will agree with me '

Thank you for this forum it gives me somewhere to vent my anger and frustration to people who seem to care..

Darren

[Patk1]

Hello Darren & welcome to the forum.lots of people here couldn't tolerate lufrobec + went back on fostair.I hope antibiotics clear ear infection.u must be fed up of being congested in sinuses+ ears.rhinosinusitis often goes hand in hand with lung disease.i use steroid nose spray,and find sterimar Seasalter nasal spray gd for cleaning nose + sinuses.i also take antihistamines + if I really need extra help,a decongestant. But you need to get infection cleared.hope u soon see ent.x

[Hogrider in reply to Patk1]

Hi thank you so much for your reply

I do hope the Fostair gets me some comfort back. Your right i really am fed up with being congested , been going on too long this . Forgot to mention ive just had a chest infection and been treated with antibiotics , felt ok for a few days then back again to this . I'm glad you have explained other symptoms to me because Yes this is all falling into place with me now . Its all coming back to me . I had a sinus infection according to the dentist when she took an x-ray, this was in Nov last year . Trouble is ive had that much going on , i forget things . But yes your spot on . I suppose im old school and just get on with it . Hope it clears up in the ear and they can give me a new hearing aid for my left ear and im gonna probably need one for my right one aswell . I have an old one and its so outdated that i get my batteries from Ike's store on Waltons Mountain 😂

Thank you for your great support 👍

[Patk1 in reply to Hogrider]

Fostairs made of finer particles and gets further down into lungs,so inhale as deep as u can. Do u have an aerosure spacer for inhalers - it is advised to get more frm inhaler.theyree on prescription in uk as is a peak flow meter.in future,try to avoid people with viruses as often trigger an exacerbation/infection.start treating infections of lungs/sinuses/ears asap as they are thn easier to treat and Cause less probs.I'm glad u have a gd dr fighting yr corner.

Back to sleep for me x

[Hogrider in reply to Patk1]

Hi i do use a aero chamber spacer , but there was no way using it with Luforbec. I just got into coffing fits, t his is when i new there was something wrong with that medicine .. But back on fostair now ,s o hopefully i should see some improvement in the near future .. Fingers crossed 🤞

[peege]

Hi, just to add to Patk1 's reply, someone clever found out that the propellant or 'filler' in Luforbec is different from the one in Fostair hence so many issues for we patients using it (not me fingers crossed, I'm still allowed Fostair although Ventolin is denied to me). Thank goodness you're allowed back on the one that worked!

Unfortunately we cannot be old school any more especially with our lungs which are so important to our wellbeing & future, that way leads to worsening &/or another lung disease joining the first one. We have to advocate for ourselves especially nowadays when some of our surgeries are nigh on impossible to get an appointment with - if this is the case call 111 next time, they seem to be able to get us an appointment when we fail to. IE if you think this infection hasn't cleared when you've 2 days left of antibiotics call 111 if you can't get through to GP. ......I'm not great at calling 111 cint want to make a fuss & all that plus i used to think (wrongly) that my immune system would deal with obvious infections, it doesn't work like that continuous infections severely deplete immunity (as do abs alcohol smoking & poor diet etc) .

All the best going forward, lots of us have been in similar positions. We get the frustrations 🤬

PS sorry to waffle on (brain fog)! A spacer us important to use,gets more of the medication to where it's needed. I'd suggest checking on inhaler manufacturer's website or youtube for a demonstration of exactly how to use them just incase you're getting it wrong - I used Seretide with a spacer for 3 years despite bi-annual asthma reviews.

Lastly, if you do have the beginning of copd there are lots of tips from others on how to greatly slow down the progression. Take care. P

[Choctaste]

Luforbec side effects were vile for me so they put me back onto Clenil and Ventolin thank goodness.