COPD medications

[Advideseeker]

My mum was diagnosed with COPD and asthma over 10 years ago (though most probably had it much longer than that). She is increasingly breathlessness on any exersion, but Dr's don't feel she needs oxygen as her levels settle to acceptable levels quickly. However they feel that her condition is uncontrolled due to the amount of times she needs her salbutamol. So far the respiratory nurse has only offered 1ml of oramorph up to 4 times a day. So far she has only tried it once a day, but doesn't feel much affect of it. Is this a particularly low dose that she is on? Also she is currently on clenil and spiolto respimat inhalers. She previously tried trimbow, but this made her wheezy all the time and she ended up hospitalised. I just wondered how common is it still to be on clenil with pretty advanced COPD? Is there a better steroid inhaler she should be on?

[Biker88]

I have emphysema(COPD) and Aspergillosis, I’m still using the same inhalers Seebri Breezhaler and Salamol I also have Oramorph 1.25ml every 4 hours as required. It doesn’t stop me getting breathless but it does reduce it. I take it first thing in the morning then every 4 hours after that until tea time.

[Izb1]

Sorry I cant advise but I am sure the helpline will give them a call 0300 222 5800

[PaulineHM]

Hello Advideseeker,

Sorry to hear that your Mum is struggling.

Asthma-COPD can be a complicated condition with everyone responding differently, so there will be no one single answer for everyone.

Does she have other conditions too that might impact on her breathing as well ?

I was diagnosed 20 years ago with asthma COPD. For the last 7 years I have been taking high dose Relvar, Incruse and Carbocisteine. Oxygen therapy. For the last two years I have been taking Roflumilast- which is for severe COPD and can only be prescribed initially by the consultant. The Roflumilast has helped me hugely. No opiates yet.

I try to keep as fit as I can. Life isn’t always easy. I need regular help and support to manage certain aspects of my life.

Hopefully your Mum will feel more comfortable soon.

Go well,

Pauline

[Advideseeker in reply to PaulineHM]

Hi, no other conditions other than fluid retention. She had a full mot when in hospital and heart etc are all fine. I feel like she's not had a lot of different medications. My husband has asthma and is on a stronger steroid inhaler than she is (luforbec) and his breathing is nowhere near as bad as hers.

[PaulineHM in reply to Advideseeker]

Hi, it is tricky knowing what to advise for the best. It must be painful for you to see your Mum struggling as she is though and horrible for her too.

I have lots of thoughts…which may or may not help, however perhaps the most helpful things you could do are; a) ask for a second opinion from another respiratory consultant. b) call the Asthma Lung U.K. helpline and speak with a specialist nurse there. Perhaps a call to the helpline might help you decide whether to ask for a second opinion or not ?

Let us know how you get on.

Go well.

Pauline

[Badbessie]

Medications can be very individual in their effects. When needed I take up to 2.5ml of oramorph and it does relax my chest to allow me to breathe more easily. Sadly inhalers can be a matter of trial and error until you find the right one. To be honest perhaps your mum should see a respiratory consultant who could give an opinion on the best inhaler.

[Advideseeker in reply to Badbessie]

She did see one in Aug. They said trimbow was the best inhaler, but this previously didn't agree with her at all and made her wheezy all the time. The consultant put her on spiolto and after some debate about totally taking her off a steroid inhaler, then then left her on clenil.

[Troilus]

Hi Avideseeker.

I was diagnosed with copd and asthma. Initially I was prescribe a Seebri inhaler alongside salbutomol. At an emergency appointment at the hospital the Seebri was swapped for a Fostair 100/6. At my next review with the consultant the Fostair was upped to 200/6. (By this point I had had 2 courses of prednisone in two months) After another course of prednisone about 4months later, Spivira Respimat was added to the mix. One more course of prednisone 2 months later and Montelukast was added to the mix. Trimbow was considered but the steroid element of my Fostair was higher than that in Trimbow. About a year, maybe 18 months later I was put on a mart regime- I take my normal 200/6 on a daily basis with up to 4 puffs of the 100/6 spaced out throughout the day when my peak flow starts to drop in order to avoid prednisone.

My specific allergy tests came back negative but total IgE was high so I also take double dose antihistamine, Flixonase for persistent allergic rhinitis and an antihistamine nasal spray (name of which I forget for now)

I think my point here is, yes there are many medications your mum could take. (I was fortunate in that I was under the respiratory clinic at the hospital from the off) My second point is that a diagnosis of asthma copd can be difficult to manage - how much is asthma and how much is copd? I had a nurse who did my review who told me not to take my blue inhaler when I was breathless and another who told me to “push the blues.” I have had a GP more or less dismiss my breathing problems with “ you do have emphysema you know” and a lovely nursing sister who understood that my peak flow could be improved and worked to optimise my asthma treatment with the view “treat the asthma and what is left is copd’

As someone has already said I would ring the nurses here at ALUK. Have a note of what tests your mum has had and any results. Does your mum take her peak flow? This isn’t usually done in copd but is recommended in asthma. (I took mine religiously which is what led to my current medications- which, by the way, work very well for me.)

It is a road with many potholes but with the right information I’m sure you can pick your way through it.

[Advideseeker]

Thank you for your advice. I have researched fostair and thought that it might be an option for her. One consultant she saw poo pooed the idea she has asthma too, but she has reactions to bleach/smells, hayfever and other asthma traits. At her initial diagnosis they did say a bit of both. The trimbow really seemed to aggrivate the asthma symptoms and caused a couple of asthma attacks. We will get back in touch with the respiratory nurse to discuss options.

[Troilus]

Hi again - if there is doubt about mum’s asthma see if she is able to take her peak flow. I have had medics - nurses, consultants, doctors tell me I don’t have asthma but when I put my peak flow graphs on the desk they recognise the pattern as asthma. - Just a thought.

[Karenanne61]

Hi. I would suggest your mom perseveres on the oramorph. I am allergic to morphine so take oxycodone instead. 1 25 mls , four times a day. I find it helps. I'm sorry I can't help with inhalers except that they do take a while to work and I always use a spacer with mine. (Alvesco and trixeo)