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CHANGE OF MEDICATION

halsa profile image
22 Replies

Have severe Emphysema/COPD on oxygen 24/7 was diagnosed more than 25 years ago despite everything keep positive. Saw my Consultant last week (see him every 6 months) he changed my inhalers from Seretide, Spiriva twice per 24 hours and Ventolin to Onbrez 300 m, Flixotide 500m, Spiriva twice per 24 hours and Ventolin.

As I was quite settled on Seretide he said if I did not like Onbrez and Flixotide I could revert back after a months trial.

Have you been changed to these new drugs and if so what was your experience and did you like them and get good benefit.

Thanks for your help.

Robert

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halsa profile image
halsa
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22 Replies
Toci profile image
Toci

Hello Halsa. I have never known Spiriva be taken twice a day, as one dose lasts 24 hours. Other than that I can say I was put on Onbrez but had to stop using it when it caused terrific pain in my face. I have never used Flixotide.

halsa profile image
halsa in reply to Toci

Dear Toci,

Thank you for your reply and help, with regard to using Spiriva twice Morning and Evening, For about 7 years I was on just one inhale each 24 hours about a year ago I was asked to trial it twice each 24 hours and to report how I felt each week to my Consultant, the trial decided from the results that it is beneficial for some patients to use it twice a day. As it is the same strength each time it is used as you rightly point out it is a double dose each 24 hours, however it does help me.

Around 3 years ago my Doctor advised me I was very ill and unlikely to survive and "to put my affairs in order"

I am not a quitter and am still here 3 years on, so I will try anything my Consultant suggests and the extra Spiriva has helped.

Your help is greatly appreciated thanks for replying.

Robert

hopetorun profile image
hopetorun

Hello robert

I have been on spiriva about a year now and I must say that I can do more than i used to. I thin k my breathing is easier but I seem to have more energy so perhaps i am getting more oxygen around the body.

I did not do so well on the Flixotide I believe it worked well but it relaxed my vocal cords so much I could not speak.

Now I am sure that for my partner and the guys at work this was a relief but i found it a tad frustrating.

AS drugs are changing all the time we have to go with the flow and unless it makes you bad in some way give it a go you have nothing to loose. hope you get some improvements. Irene

barnsleysue profile image
barnsleysue

Hi I loved Spiriva , but I got sore nose & itching so had t come off it ...tried 2 other inahlators neither was suitable . Been t drs today and she given me Onbrez Breezhalor 150microgrammes I went on web & found info about Onbrez & asked dr today if I could try it . I had t wait most of day t get it , pharmacy had never heard of it , I am presuming its what hospital supplies I could b wrong , anyway, ..Fingers crossed it suits me , time will tell , meanwhile dr got me an apptmnt wi consultant ..keep me posted how u get on with it :sue

halsa profile image
halsa

Thank you everyone for all your help and replies I will be starting the two new drugs today and continuing with the Spiriva which has served me well for many years. I was well settled with seretide/flutiscane and am not looking forward to these new one's as it does not take much to upset the balance of my illness which I have fought now for more than 25 years now. In a few days I will keep you posted.

Best regards to everyone.

Robert

Iwas told only consultant could prescribe onbrez ...is this true or not does anyone know?

stilltruckin profile image
stilltruckin in reply to

This may be relevant . . . midmerseymmb.nhs.uk/recomme...

[Quote] The Mid Mersey Medicines Management Board (4MB) recommends INDACATEROL 150 & 300 micrograms (Onbrez Breezhaler®▼) for RESTRICTED USE in adults with Chronic Obstructive Pulmonary Disease (COPD)

Important Prescribing Issues:

Indacaterol is suitable only for a limited number of patients i.e those with stable mild to moderate COPD (FEV1 > 50% of predicted) who remain breathless or have exacerbations despite use of a short-acting bronchodilators as required, where the decision to add a long-acting bronchodilator has been made and then only when formoterol or salmeterol are unsuitable due to intolerance, poor adherence, or sub-optimal inhaler technique.

No patient-orientated outcomes (i.e. reductions in exacerbations) have been included in the primary end-points of the indacaterol studies published to date.

The long-term safety profile of indacaterol is currently unknown.

No combination of inhaled steroid and indacaterol is currently available. If the addition of an inhaled steroid is clinically necessary such use would be unlicensed.

The addition of an inhaled steroid to indacaterol would result in a significantly greater acquisition cost

compared to a licensed alternative combination product . . . [/quote]

halsa profile image
halsa in reply to stilltruckin

Thank you so much for this information it is greatly appreciated.

Robert

barnsleysue profile image
barnsleysue in reply to stilltruckin

This must b me as I have had 3 different inhalers 1 being salmeterol which I could not cope with , I am on Onbrez only started it a week ago so fingers crossed it works meanwhile dr got me appointment for chest clinic :sue

Toci profile image
Toci in reply to stilltruckin

No wonder it didn't work for me! They gave me Onbrez recently and I am at the very severe stage! It was prescribed by the respiratory nurse at the hospital. Doh!

barnsleysue profile image
barnsleysue in reply to

I got Onbrez from dr ....look at my earlier post ...I researched it & suggested this t my dr .....I do think its usually only prescribed by hospital , ( a friend of mine is on it & his was prescribed by consultant) maybe I was lucky as dr had t look it up as she had never heard of Onbrez :sue

Toci profile image
Toci in reply to barnsleysue

It is a bit much when we have to find our own medication! I hope things improve for you once you have had your hospital appointment. x

barnsleysue profile image
barnsleysue in reply to Toci

I know toci , it's poor , but at least this dr listened & I am going t specialist ( it's cost me a blooming fortune in prescriptions) & still not sure this med is ok as first 1 Spiriva was brill untill I started having reactions t it a few weeks down line ....here's hoping !! :sue

Toci profile image
Toci in reply to barnsleysue

Onbrez didn't suit me. I am currently using Eklira Genuair, which works extremely well, with few side effects - just in case you need to prescribe yourself another one! :)

barnsleysue profile image
barnsleysue in reply to Toci

Lol , I got that on my list ( no kidding ) ......what effect did Onbrez have on you ? :sue

Toci profile image
Toci in reply to barnsleysue

Just did not work - but I can see why now I know it is for FEV1 50% and above, as mine is under 20%. It also gave me pains in my face. x

barnsleysue profile image
barnsleysue in reply to Toci

Fev1 ? I'm not up on some abbreviations , also I have learnt a lot from this site , I need to impress upon these medical peeps I want more info from them :sue

Toci profile image
Toci in reply to barnsleysue

When you take a spirometry test, blowing down the tube into the machine, they take several readings. If you ask for your FEV1 percentage they will tell you it and you can then track where you are. The 'stages' of COPD are set by the FEV1 % reading, so you can see your stage but you can also use it to see how you are doing, by tracking your progress through the readings. Some like to know (me!) and others do not. Often it will dip a bit when you are not well and recover a bit as you feel better. Your choice.

halsa profile image
halsa in reply to Toci

Dear Toci,

Mine is 17% but then I have had Bullous Enthysema for over 25 years, 2 years ago I was told to put my affairs in order, but I do not give in. Also have serious heart problems problems following heart attack, and now have two types of fibrillation Sinus and arterial so I guess my organs are now getting in trouble. Still I want to live life to the full.

Best Regards

Robert

Toci profile image
Toci in reply to halsa

Good for you Robert. "I do not give in" - my feelings exactly. xx

halsa profile image
halsa

Many thanks Toci and Barnsleysue I am also very severe and on oxygen 24/7 I am trying both the new drugs but so far it does not seem as good as Seretide with flutiscane but we will see how I go! however, I am a bit confused as I do not think it is a substitute for Spiriva which I still have to take with Onbrez and the flutiscane substitute.

My Consultant has said if I feel that I am no better to go back on Seretide after a months trial.

Halsa

barnsleysue profile image
barnsleysue

Bless you Halsa ( that's a beautiful name ) if you do not think its working do not wait a month get in touch & tell them it's not suiting you ...my dr gave me an inhalator & I knew after a couple o days it was not right , so after a week I went back & told him I needed something else as it was not working ....I wish u well ..keep in touch please :sue

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