Trimbow: I take 2 puffs of Trimbow... - Lung Conditions C...

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Trimbow

Jansy16 profile image
54 Replies

I take 2 puffs of Trimbow twice a day, has anyone been told they can take more as I feel I need to take it 4 times a day, it's the only thing that helps as I have very severe COPD. I find the Ventolin next to useless. Hope someone can help with my query. Thank you all & hope everyone is as well as can be expected with this dreadful illness.

54 Replies
Patk1 profile image
Patk1

Do ring yr gp and discuss it asap x

Jansy16 profile image
Jansy16 in reply to Patk1

They just don't want to know, they just say you're on the strongest inhaler.

Patk1 profile image
Patk1 in reply to Jansy16

But if u feel u need to increase useage,u need their input.Ru using spacers with puffers? Id be using salbutamol as prescribed too. Do u have a respiratorr or asthma nkurse at gp? U could talk to them for advice

Sara_2611 profile image
Sara_2611 in reply to Jansy16

yeah - theyre good at fobbing you off

sassy59 profile image
sassy59

You need to contact your doctor Jansy and tell him how you’re feeling. Xx

Jansy16 profile image
Jansy16 in reply to sassy59

The just tell me I'm on the strongest inhaler, they just don't want to know.

sassy59 profile image
sassy59 in reply to Jansy16

You need to fight for you Jansy. Sadly it’s like that nowadays. Xx

LungLou profile image
LungLou in reply to sassy59

So true. Frustrating that the less energy we have, the more we need to fight for decent help.

O2Trees profile image
O2Trees in reply to Jansy16

That's quite an ignorant reply Jansy. You might be able to double up your current dose (Im not suggesting you do that as I dont know your situation, but it could be a possibility).

Do you have asthma as well as copd? I do and take Symbicort, a combination inhaler. There is a thing called the smart system, whereby patients can take extra doses if they feel they need it. But that only applies to asthma patients.

Changing your inhaler might be an option. There are sure to be several others which are equally as strong whatever your doctor/nurse says. People often need to try out different ones until they get the one that suits them. As Sassy says, we all need to fight for ourselves - dont give up. You could call the BLF (is it still called that?) helpline which used to be accessed by clicking on the long lost red balloon. Maybe someone here will know how to get through to it - the helpline is excellent at talking things through.

JJ_7 profile image
JJ_7

Hi Jansy. My GP placed me on Trimbow and I had the same experience as you. Just wasn't giving me long term relief. I then started Fostair which works well with 2 puffs Bd. Speak to your GP and have him log your experience as we are not the only ones to think Trimbow is less effective than tiotropium plus cortico steroid inhalers. I know for a fact that Trimbow is less expensive than mixing 2 separate inhalers. We have all paid into the NHS for many years and we deserve better!!!

anng18 profile image
anng18 in reply to JJ_7

Hi JJ,

Very interesting. I used Spiolta and then was getting so bad, had a couple of puffs of 'out of date Fostair' - it was a great combination! However, COPD nurse told me that she was not allowed to prescribe that combination, as she had to use what was recommended by the NICE Gold standard and, as such I was put on Trimbow.

Trimbow was good, on the cross over, as I still had some Tiotropium in me, but the effects have diminished over a six weeks period and last night I had an extra puff!

Damon1864 profile image
Damon1864Volunteer

I'm on Trimbow and it's been working fine for me but I think I need to take it more than twice a day, I will be talking to my GP about it. Hope you get sorted and have a lovely day take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Charlie_G profile image
Charlie_G

With the caveat that I’m not medically qualified. As others have said, you do need to speak to your GP and get them to take action, but having checked the BNF, which is the prescribing guide used by all doctors in the UK, the maximum dose of Trimbow is two puffs twice a day.

O2Trees profile image
O2Trees in reply to Charlie_G

Ah, useful Charlie - and yet Sundance below is taking 6 puffs a day.

Charlie_G profile image
Charlie_G in reply to O2Trees

Inhalers can be taken at off-licence doses, but only on a specialist’s say so - I should have been more specific in saying the GP can’t override the BNF dose. Bod used to be on symbicort, and was on more than double the max adult dose (6 puffs BD at one point) on her consultant’s direction. What I should have done was clarify whether Jansy has respiratory led care, but just assumed not due to the GP making the call.

Sundance115 profile image
Sundance115

I have been on trimbow 2 puffs x3 times via spacer for a couple of years.This dose was recommended by a resp.research prof at Wythenshawe hosp.

His exact words were it wont kill you to take three times daily.

His letter to my gp stated the drugs were perfectly safe, but doubt the gp would have sanctioned this without his recommendation.

I take it approx. 8/2/8 pm

He also said could take salbutamol 6/8 puffs via spacer if needed. as good as using a neb, although haven't needed to take this amount.

CDPO16 profile image
CDPO16 in reply to Sundance115

I am on a very high dose of fostair 200/6 advised by my former consultant at Wythenshawe. But for him I wouldn't have been prescribed it. He said it was preferable to taking a lot of oral steroids. Unfortunately I have needed these too this last winter but up to then the fostair dose had worked well.

Charlie_G profile image
Charlie_G in reply to Sundance115

Off licence doses are indeed only at a consultant’s say so - I should have qualified my own reply a bit more to make it clear that GPs can’t exceed the BNF dose. At a consultant’s discretion, inhalers can be used at significantly higher doses.

Troilus profile image
Troilus

Hi Jansy, just recently I had a review with the asthma nurse from my GP surgery and she mentioned Trimbow to me, but commented that it was as not as high a dose as the Fostair 200/6 and Spivira Respimat that I currently take. She said some people prefer it as it is more convenient just having the one inhaler. So maybe this might suit you better?The conversation came about because I am also under the respiratory clinic at the local hospital where the consultant said to take extra Fostair when I experienced a slide in peak flow. I had asked her if she could prescribe me an extra Fostair, but of course was refused as this is an off license dose.

Now waiting for my consultant to ring……………

CDPO16 profile image
CDPO16 in reply to Troilus

I am on fostair 200/6 four times a day as advised by my former hospital consultant. But for his advice I wouldn't be on that dose. Good luck when you speak with your consultant.

Sundance115 profile image
Sundance115 in reply to CDPO16

It is always good when you get to speak to a consultant that is willing to think outside the box to try some additional relief.whatever inhaler I have tried over the years I always felt a top up was needed in beteen the 12hrs, and don't think I have ever waited the 12 hrs before taking second dose.

Hope you are feeling a little better lately.

Troilus profile image
Troilus in reply to CDPO16

Are you allowed more than one on your prescription? I’m sort of managing on the one inhaler, but I can’t take it long enough to get me back up where I should be.

I was wondering whether to ask for a 100/6 to be added to my prescription- to give me more flexibility. Does that sound like an option to you?

CDPO16 profile image
CDPO16 in reply to Troilus

Yes I get 2 a month. One lasts about 2 weeks.

Troilus profile image
Troilus in reply to CDPO16

That’s good to know. If I don’t get an appointment through soon (I’m due one round about now) I’ll hassle someone 😁Thank you.

CDPO16 profile image
CDPO16 in reply to Troilus

I hope you get on alright. I was admitted to my local hospital with a flare up for the first time in July 2020. The consultant and the hospital pharmacist questioned the dose as it is not approved. It was a letter in my GP records from the consultant at Wythenshawe that led to me continuing on it. Prior to that I had been on fostair100/6 two puffs four times a day. It was changed to Fostair 200/6 when that became much less effective. I have found that this higher dose is less effective now than t was 3 years ago but I always suspected that that would happen as my emphysema and lung function worsened. I recall the professor at Wythenshawe who advised the initial increase of Fostair 100/6 from twice a day to four times a day saying that it was virtually impossible to overdose on Formoterol. He was part of a world wide group of professors and consultants doing research into COPD and very knowledgeable. I have emphysema with late onset asthma overlap.

Sundance115 profile image
Sundance115 in reply to CDPO16

Would that be Prof. V. by any chance?

CDPO16 profile image
CDPO16 in reply to Sundance115

Yes, Professor Vestbo. Wonderful doctor. Unfortunately only saw him once while I was an outpatient for two and a half years.

Sundance115 profile image
Sundance115 in reply to CDPO16

Yes he was wonderful, both as a doc and person.The trick at clinic was when handing your paper in to the nurse was to ask her to put you down to see prof V, or any of the others you preferred.

Alas he doesn't get to Wythenshawe much due to covid and only sees face to face patients in his home country.

CDPO16 profile image
CDPO16 in reply to Sundance115

I never thought of doing that and instead used to sit in the waiting room hoping that I would see him if he was in clinic. Always disappointed when I didn't. Once got seen by the nurse who claimed to be Dr B's right hand man who called everyone darling. Really annoying! I was discharged as an outpatient in 2018 when, having investigated all options, Dr B decided that there was no more he could do.

I hope that they are looking after you well if you are still a patient there

Sundance115 profile image
Sundance115 in reply to CDPO16

I haven't been discharged YET, but keep expecting it. These days one receives a telephone call once a year, usually by Prof. S.

CDPO16 profile image
CDPO16 in reply to Sundance115

I had heard that it was just telephone support now. It's a pity that they haven't got back to some face to face yet. I was expecting it when I was discharged although it is disappointing when it happens. That said for me it was an 80 mile round trip and I don't miss the journey at all. Bets wishes.

Steve4666 profile image
Steve4666

Hi Jansy16, after a six week hospital stay last year, my consultant changed my prescription from Spiriva and Symbicort to Trimbow. So far it’s worked ok, but he said if i have any problems with it, to contact my GP and ask him to prescribe me with an inhaler called Trellagy, which he reckons was really good. Maybe worth a try?

splinter07 profile image
splinter07

Trimbow two puffs twice a day, am. Pm

splinter07 profile image
splinter07

Take two puffs on a morning and two before bed, use a small spacer if you have one.

Lol1944 profile image
Lol1944

Jassy, you say your gp doesn't want to know.You need to tell him that his stock answer is simply not good enough. Ask and do not take no for an answer to see a respiratory nurse specialist or consultant , or local respiratory team if you area has one.

If you do not shout and stick up for yourself it sounds as if you will get no help. You gp is exactly that , a general practitioner, and you need help from someone in respiratory. Some GPS are great, some not so great. You should not suffer as you are doing

Danielmystar profile image
Danielmystar

Hi Jasy16 I'm on Trimbo have been for about 4 years Dont take anymore than 2 puffs twice daily I was told myself if I felt I need more to see doctor they will proberly change you to a different inhaler x

paco19613 profile image
paco19613 in reply to Danielmystar

hi danielmystar was just reading your post from 3months ago were you were explaining that you had been on trimbo for 4 years 2 puffs twice a day…….can i ask you how long was it before you begun to feel the full benefit of it (not feeling out of breath)and do you still feel it’s as good now after 4years ? karen

Danielmystar profile image
Danielmystar in reply to paco19613

Hi paco19613 I was on it about a week when it kicked in properly now I find im using my Salbutamol on and off through the day especially when the weather changes but trimbo does still help me

paco19613 profile image
paco19613 in reply to Danielmystar

thankyou most helpful , im assuming that you are still on it ?

Danielmystar profile image
Danielmystar in reply to paco19613

Yes im still on it to be honest I was in a bad way before they put me on Trimbow so to me it helped me alot then and still helps me now .

Danielmystar profile image
Danielmystar in reply to paco19613

Are you on Trimbo yourself or have you been offered it .

paco19613 profile image
paco19613 in reply to Danielmystar

i was put on it on monday this week previously fostair for 10 months alongside ventolin for 40+ yrs , so desperately hoping this is going to work …. tbh 5 doses in i think i do actually feel less breathless 👌🏻i do find im coughing slightly more struggling to bring stuff up and a dry mouth , but saying that i can easily put up with that if this gonna work for me .also used less ventolin …thanks for your replies it’s comforting to know how much this has helped you thanks karen x

hillclimber1 profile image
hillclimber1

I am not a doctor and not looking to go against medical advice. My wife had a similar experience and moved to one puff four times a day, which works much better for her, but the doctor is not in agreement with her.

auntyrita profile image
auntyrita in reply to hillclimber1

hi i do the same

Alberta56 profile image
Alberta56

I hope you can get satisfaction soon. Just try to remember we are all behind you when you push for your rights. Good luck, Alberta xxx

garshe profile image
garshe

We cannot give medical advice. Has to be your GP or Respiratory Team .Sheila x

LungLou profile image
LungLou

I got prescribed Trimbow but OMG it is too strong I just keep coughing. My Respiratory consultant prescribed it yet my Home Ventilation Consultant says I don’t need it arghhhh

cathykay profile image
cathykay

Hi JansyI am also on trimbow 2 x 2 pd I also have server COPD and Emphysema iam waiting for a nebulizer assessment arranged for June also waiting on an oxygen assessment no date as yet.

Hope you get it sorted.

Take care

Timberman profile image
Timberman

The device is metered so if you take more it will run out sooner. Actuators are in 60 and 120 dose sizes and they are accurate. 2x2d is 120 in a month which is what I take. But I now have a problem as I cannot find in the three medicines included any tiotropium which I took prior to changing. So I am off to seek advice!

Alice70 profile image
Alice70

Hi Jansy ,after reading your post ,you would swear I wrote it ,I'm am in the exact position as yourself trimbow not doing me much good neither is Ventolin, I have asked my consultant can I take more ,she said definitely not ,she did try me on trelegy that was worst as it is only one puff ,I have severe copd ,I am going to be assessed for oxygen at the end of the month ,I'm sure if I could only take two puffs extra of trimbow I would get through the day,and maybe wouldn't need oxygen ,it seems that if we tell our doctors that medication not as good as it was they just think our condition has got worse ,instead of thinking that maybe we have gotten used to meds they should consider this like you Ventolin has never been any good for me,I was on fostair and spirva ,I have been on trimbow three years now

Sara_2611 profile image
Sara_2611

i use ventolin & another inhaler - it does me a little bit cos its getting increasingly difficult to take deep breaths in

ljk1 profile image
ljk1

My practitioner nurse told me to take extra if I needed to, also upto 10 of ventolin equals a nebuliser . The Trimbow worked like magic for past couple of years but I’m also declining so have today started taking extra dose to see, there are extra doses in the container but obviously not a months supply 🤷🏻‍♀️ I’ve put on a lot of weight so I’m wondering if that’s made a difference, plus I’ve got used to it?🧐 So started back on the diet 🙄😁

briany profile image
briany

helo jansy 16, iv been on trimbow for about 4 years and i use the plastic chamber with it, and its seems to do the job but these doctors cant just write you o0ff and say your on strong dose, he who shouts loudest gets heard

god luck briany

Jansy16 profile image
Jansy16 in reply to briany

Thank you Briany, I just feel I need 2 extra puffs a day as I get up at 5am & find the day is too long just to have 2 puffs twice a day. The Dr usually leaves it up to the practice Respiratory Nurse & it's hard to get through to her of my needs. I'm really struggling at the moment.

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