Trimbow

[Jake25]

I've been on trimbow 87/5/9 for well over a year as they said it would help lower the exacerbations I was having. So over the year I've still had two or three exacerbations, so at the beginning of this year they decided to up the dose to 172/5/9 and still I've had 2 exacerbations one really bad because they don't give rescue pack's now. So when I saw the nurse I said I didn't think the higher dose has helped I haven't felt any difference I'm still struggling with breathlessness. So now I'm going back to the old dose. How will this help?

I am having some blood test done on Friday to see if there's anything that may be causing breathlessness. I'm so fed up of being past from pillar to post. I'm so fed up of struggling especially at work. I've started going to a gym every week and I am being referred to the respiratory team.Sorry I'm just venting, I know I'm being helped, but I do feel very down at the moment. 😔

[Alberta56]

I hope your medics will change you to a more effective regime. It sounds to me as if Trimbow is not suitable for you. (Of course I am not a doctor.) By going to the gym you are doing your best to help yourself. Good luck in getting medication which works for you.

[Jake25 in reply to Alberta56]

Aww thanks for your reply Alberta ☺️I do hope they can sort it out soon.

[Patk1]

Perhaps respiratory team appointment will be more useful.yr bound to feel low after flu + exacerbation + winter doesn't help.do carry antibacterial gel to help avoid viruses.do you use lung clearance techniques ea day/ twice a day to bring mucous up? If not,it's worth looking on aluk website for clearance techniques,eg huffing,acbt.once it's up,breathing should improve

[Jake25 in reply to Patk1]

Aww thanks for your reply Pat.Some days I have mucus and some I don't, but I do the huffing to get any up. I know it's not been long since I had the flu.

I just get frustrated I can't see going back on the lower dose will help at all, the reason why they upped the dose was because I was breathless and it wasn't helping with the exacerbations. I just feel like I'm going around in circles. Anyway I will see what the blood tests say and look forward to speaking to the respiratory team.

I really appreciate all the replies ❤️

[Patk1 in reply to Jake25]

Yes.hard to know what to do at times,whn recovery is slow.yr doing well keeping active.

[watergazer]

Vent away. We all encounter problems like this and can sympathise xx

[Superfly1975]

why does your practice not issue rescue packs? I get mine with no issues, it is still NHS guidence that they are issued if your diagnosis dictates.

[Jake25 in reply to Superfly1975]

Hi SuperflyYes I've argued with the practice, they say they must see you now before prescribing. As people are over using when there's no infection. I've told them they are putting me at risk, as I do not want to go to hospital. 🙁

[Superfly1975 in reply to Jake25]

I can understand that to a degree but overuse is usually due to the medical staff not fully explaining the difference between a cold and an exacerbation or the difference between viral and bacterial infections, education is a wonderful thing if they could be bothered to do it properly, they don’t seem to understand that a weekend without a rescue pack can have a serious adverse effect on someone with lung disease depending on the severity.

[Izb1 in reply to Superfly1975]

My practise wont issue rescue packs any more and haven't done for the last couple of years, luckily it's has been a while since I have needed them but have to go through the doctor to get them x

[knitter]

I hope the blood tests can reveal a reason for your breathlessness . Underlying infection , or anaemia perhaps .

My last blood test showed my infection had cleared after multiple doses of antibiotics.

Just to say Trimbow didn’t suit me I have asthma as well as COPD, and my peak flow reading kept on going down . So back on my previous medication .

But that’s my individual experience , others do well on it . Take professional advice …I went to my pharmacy first as it was a Saturday , they referred me to nurse on the Monday

Have you been referred to Pulmonary Rehabilitation .

Have you asked for advice at your gym , what exercise is best , how much to do etc?

Best wishes.

[Jake25 in reply to knitter]

Hi knitterI have asthma too, they keep telling me that Trimbow is the premium medication which scares me if it's not working. I've been referred to a local gym as I couldn't do pulmonary rehab due to work. I'm just doing strengthening exercises upper and lower body.

Hopefully blood tests may give an answer. I am unable to do a peak flow I just don't have the breath.

Thanks for your reply I really appreciate it. ❤️

[armstrong2]

hi l am on trimbow 87/5/9 l have been on it for a few yrs also l have had numerous exacerbations but unfortunately that all goes with the disease...l have been told that trimbow is one of the best inhalers to use ....enquire when you have your blood test if your breathlessness is cased by any other underling problems ?...my breathlesness has worsens and now prevents me from doing alot of things l use to enjoy and now in the last few months l have been told l have heart problems pending a stent to be used ...good luck and take care

[Jake25 in reply to armstrong2]

Hi ArmstrongThanks for your reply

Yes I've also been told that Trimbow is the best medication, last year I was told I had asthma too which I think plays a big part with the wheezing in cold weather.

I too am struggling badly I can get very breathless just walking a couple of yards, then other times I'm OK.

This is what I don't understand maybe there is an underlying problem. Its getting me very down.

Have you ever been prescribed the higher dose trimbow?

I hope you are getting regular reviews on your condition, don't put up with struggling.

I wish you all the best with your stent procedure. ❤️

[armstrong2 in reply to Jake25]

good morning jake ...no l havent been put on any higher dose of trimbow because the dosage l am on seems to suit with the help of the ventolin also l am taking 3x daily carbocisteine which has kept the horrible mucus on the chest at bay ..good luck to you for friday please keep intouch via this forum to see how thing progress and take care

[anng1814]

Hi Jake,

I was put on Trimbow, for nearly 3 years. My peak flow went down and my FEV1 quite dramatically. I had at least 3 to 4 exacerbations a year and my capacity to exercise went down, quite dramatically. I also had panic attacks every morning for about 3 to 4 hours and needless to say, lost weight. I was finally referred to the respiratory nurse at the hospital, who has very reluctantly altered my medication to Spiolta and Clenil 200. It is early days, as the pharmacist told me it takes about 3 months to feel the full benefits, but the panic attacks and the feeling of tightness in my back and stomach have definitely subsided.

If I didn't feel so relieved, I'd be very angry with all the doctors and nurses I've spoken to about changing my medication. They are all promoted Trimbow (possibly because it is cheaper, than using a variety of inhalers) but it really didn't agree with me!

[jackdup in reply to anng1814]

That’s ridiculous. If the inhalers they prescribed clearly weren’t effective they should have done something far sooner. I can understand giving it three months to get the full effects but three years, that’s certainty unacceptable.

[anng1814 in reply to jackdup]

Yes, so annoying. The doctor seemed to think I needed counselling and wouldn't believe it was Trimbow. The second doctor was the same and the nurses kept saying it's the best inhaler. I gave up, but delighted not to be on it anymore!

[jackdup in reply to anng1814]

The best inhaler? All you have to do is read posts here to find that certain inhalers don’t work for some and work great for others . If they worked for everyone we would only need one inhaler. Like with pretty much every medication different people react differently to the same medication, and if anyone should know that it should be doctors.

[anng1814 in reply to jackdup]

Yes, I totally agree with you.

However, I just wanted to mention one inhaler, that my good nurse, who referred me to the hospital, did try with me. It was Trixeo and it was a big improvement regarding breathing and enabling one to do things. Unfortunately, I had a few unpleasant side effects, but it maybe a good inhaler for you.

[jackdup in reply to anng1814]

Thank you I’ll have to remember that for when I see my doctor next time as I wouldn’t mind trying it,

Take care

[knitter in reply to anng1814]

After a few days on Trimbow my chest got tighter and my peak flow went down . I went to my pharmacy as it was a Saturday , and told my asthma nurse on the following Monday . They recommended I stop and try again later , and use my 2 normal inhalers . But I was given the choice by my health professionals and they did listen to me .

It’s Salbutamol I have problems with if I take too much , one doctor told me I was wrong. Hum .

Less emissions for NHS maybe ….1 inhaler instead of 2 ? I don’t know.

[Jake25 in reply to anng1814]

Thanks for your reply Ann. I can totally relate to you regarding the panic attacks.The more breathless I get the more anxious I become. Its difficult to know if it's the anxiety making me worse. It's a vicious circle.

I hope the inhalers you are on now really help you. ❤️

[Apollomycat]

Hi Jake25, sorry to hear about you feeling down. I was put on Trimbow 87/5/9 a year gone last January after I had a really bad chest infection , I was like you, really down. A really good respiratory nurse gave me a few good tips. I wake up really early in the morning because the cat needs feeding, make myself a cuppa. She told me (if I could manage) to take the blue inhaler then as I go back to bed again for s sleep. I wake up later about 10am and she said to use the Trimbow then as the point for this is I start to do more in the kitchen etc and so the Trimbow is more beneficial and the blue inhaler will have helped to open valves. The same in the evenings. Dont take the Trimbow too late at night as you are just lying in bed and again it's not beneficial to you. I take one or two puffs of the blue inhaler again during the day and then when I'm going to be more busy about 8pm before doing evening meal etc I take the last dose of Trimbow. This routine helped me a lot and BTW I have Severe COPD. Also note you have to give it about a week for your system getting used to it. I really hope this may help you and you feel better soon. Bye for now and take care

[Jake25 in reply to Apollomycat]

Aww thank you appollomycat.❤️Yes I was on the same dose of trimbow as you for about 2 years, but the breathlessness was getting worse. So last Nov they decided to put me on a higher dose, they said I should have noticed a difference by now, but it hasn't helped so now I'm going back to the lower dose. I have asthma too apparently don't know if this is making a huge difference to the breathlessness. What I need is someone who knows about COPD and what will help me. I'm due to have an operation on my kidney but I won't be having it if I'm still this breathless.

[Apollomycat in reply to Jake25]

Remember it takes a new or higher mg of inhalers etc a couple of weeks to adjust in your system. Also I forgot to mention that I have been given new patches called: Buprenorphine 5mg to stick behind my shoulders, stick one for 7 days and then change to the other shoulder for 7 days, it just takes the edge off the breathing problem but not magical. You could ask about it but it's not suitable for everyone. Take care and just take it easy meaning walking slower and doing things slower. Bye for now.

[Advideseeker]

My mum has Copd and asthma and was put on the lower dose trimbow. It really did not agree with her and she ended up hospitalised for the first time with an exacerbation. From what I understand, the trimbow only treats the copd, not any asthma element. She was moved to spiolto respimat and clenil 200. She also has montelukast for nights and this combination has helped and seen her go longer between any infections or flare ups than she had went in years.