Trimbow inhaler

[Vilagaeta]

I've just been diagnosed with copd and have been prescribed trimbow inhaler, if anyone else is using it can you tell me how you are getting on with it

[Damon1864 Volunteer]

Hi I am on Trimbow and it seems to be working fine at the moment. Hope this helps. Please let us know, take care and have a good weekend 😊 xxxx

[syntax in reply to Damon1864]

Hello,

You say it is working well at the moment. But was is it actually doing for you

please.I am using Ventolin Evohaler with Salbutamol, and have been for years.

What does it have in it and how many times a day is it used please.

I also hear tell of a different way of introducing Stem Cells (your own ) into

your system.We paid for the treatment in Germany ( £12,000 all in ) and it appeared

for awhile to work.I was given 5yrs at start of COPD, and just started 12th yr.

[syntax in reply to syntax]

Still reply t6o Damon,Syntax

We now want to know whether or not the Government is going to provide the Stem Cell on the NHS. After all the stem cells are your own and do not have to be paid for,

and are put back in YOUR body.It is also an OUT Patient operation taking less than a day,and you go home ????

Anybody have comments on this please.

Regards

Syntax

[rsmrsnl]

Hi. I'm on Trimbow and and find it the best inhaler i've used, breathing has improved greatly. Good luck and hope things improve for you.

[Itsmeagain1 in reply to rsmrsnl]

I've been on trimbow 2 weeks 1st week brilliant but this week my breathing is much worse I think I'll come off it plus I'm fed up with my itchy face

[Tilantoe]

I have been using trimbow for 4 weeks now. Early days for side effects. But up to now it is the best inhaler I have ever used. Welcome to the site.

[challny]

Darn it, I want to try that Trimbow. I think it might be called Trelogy or Trilogy in the U.S. I just saw my lung doc last week and asked if a change in meds might be considered, because I felt mine (Spiriva, Symbicort, Ventolin) didn't seem to be helping much. She said nope. Glad to hear it's working for all of you.

[jackdup in reply to challny]

Did she say why? My doctor will let me try anything I want and go back to something if I find something I am trying is not working. It seems different people find different inhalers more effective so to not let you try something you may find more effective seems odd.

[challny in reply to jackdup]

Hello, @jackdup. I'm starting to wonder the same thing. I have been feeling much, much worse in the last couple of months. I was diagnosed 2 years ago and had no problems before then. This pulmonologist has a very good reputation, but when I went in to see her two weeks ago I thought I made it clear that I was not feeling well at all. She told me that my FEV1 (70 percent) and 02 sats (98) did not indicate that any changes should be made. She said my condition is "mild," although once previously she had told me it was "moderate." I even asked for steroids, and she said, "You don't need them." So, I came to her office feeling very bad, and I left her office feeling very bad. There's really no point in going to see her, is there? I don't know how you should feel with those kind of "numbers," but I can tell you that I feel terrible. I know steroids are "not good for you," but I would gladly take whatever risks are involved if it would improve my quality of life even in the short run. I'm just searching for anything that might help me feel better, and I don't think she is helping me. Yet everyone else seems to love her. Best to you and hope your health is good.

[jackdup in reply to challny]

I suspect part of the reason she doesn’t want to give you Trimbow is because it contains a steroid component and they are trying to reduce the use of steroids except in the cases where non-steroid inhalers are not giving adequate results and where people are either severe or on the severe end of moderate. I read or was told they didn’t like to give steroid inhalers unless your FEV1 was below 60% but since then I think they have become even more apprehensive about giving steroid inhalers as I believe it increaees the chances of infections or exacerbation. I also think that they feel if your FEV1 is 70% the inflammation in your airways would not likely be bad enough that the steroid would have any material effect. On the other hand if you have told her how bad you are feeling, and how bad your breathing is she would at least give Trimbow a try and see what the results are. You may just be going trough an exacerbation and a few weeks on a steroid inhaler may improve your breathing and then you could go to a traditional non-steroid inhaler. She may also feel anxiety may be playing a part as well as it can certainly effect your breathing but either way she should explain her rationale.

The FEV1 doesn’t always tell the whole story either as there are people here with FEV1s in the 20s or 30s that do as well or are as active as some with FEV1s in their 50s. Many you have lived with COPD for sometime get to a place where they ignore or don’t pay any attention to their numbers and go by the way they feel.

If your FEV1 is 70% then you fall into the moderate category which is from 50-80%. Do you have a copy of your spirometry results as there are other numbers that may give more insight than just the FEV1? If you don’t you should request a copy of them and then post them here.

[challny in reply to jackdup]

Hi, jackdup, I'm already on a steroid inhaler, Symbicort, and have been for more than a year. Also, Spiriva and Ventolin. I'm beginning to realize that I'm about maxed out on inhalers. I think my COPD (emphysema/asthma) must be worse than the doctor is telling me. All she says is your lungs are clear and you lungs are not that bad. Coughing is not my problem, just SOB and fatigue. I also asked for steroids but she said you don't need them. My 02 sats in her office were 98 percent, so I guess no 02 either (yet).

[jackdup in reply to challny]

I haven’t had a steroid inhaler for quite sometime but they always made my chest very tight but if you have been on Symbicort for a year and only recently started having problems that likely isn’t the issue. I have also had a bad reaction to an inhaler and shortly after taking it my breathing got considerably worse. I only took it once but it took a couple of days before my breathing returned to normal but again that wouldn’t seem to apply to you. Did your breathing get worse all of a sudden or was a gradual worsening over a week or month or some other period? I think it wouldn’t hurt to get a second opinion from another doctor.

[challny in reply to jackdup]

Hi, Jackdup. I think I've gradually gotten worse over the last few months. Almost from the beginning I was doing pulmonary rehab and quite a bit of exercise. Also playing golf 2 or 3 times a week, plus walking. Now, I just got back from the golf course and realized I simply could not play. I chipped and putted for about 20 minutes on the practice green. I'm beginning to sometimes feel as if I'm going to pass out when I'm doing things. Something is not right. Either my COPD is worse than they're telling me or something else is going on. I wonder if it's my heart? Though no chest pains. But I just about can't do anything. My inhalers do nothing for me.

[jackdup in reply to challny]

I think it may be time for a second opinion no matter how good your doctor is. Sometimes doctors get something in their mind and don’t look beyond the preconceived notion of what they think you have. COPD should not decline at the rate you are describing, but of course you can never say never either. We are all individual and we all vary but it you were 70% even a year ago unless you got pneumonia or a bad chest infection you should not decline anywhere nearly as quickly as what you are describing. There are lots of people with heart issues that don’t have chest pain so again it is worth getting a second opinion. It very well may not be heart related either but best to get it checked to be sure.

[challny in reply to jackdup]

Jackdup, I can't tell you how much I appreciate your taking the time to talk to me. Others on this site, too. I have a long-time partner and she knows I've got "something," but she doesn't want to talk about it at all. I am planning on making an appointment with my PCP. I like him a lot and maybe he can figure something out. So, as crappy as I've been feeling, I just forced myself to go out and take a 3-mile walk. Wasn't too bad, but I don't think I would have wanted to go 4. Have a great day.

[jackdup in reply to challny]

That’s what we are all here for and I’m sure there will be times you will be offering help to others.

[challny in reply to jackdup]

@jackdup, what I have to say here really means nothing ... but, I was just scrolling through your posts to get a clearer picture of you and came across the one you sent some time back about research involving the P73 gene and its link to lung disease. An interesting and hopeful read. I noted that the research was done at Stony Brook University. At one time, my parents lived within shouting distance of that place. Now, isn't that just fascinating!? (I know, it isn't)

[jackdup in reply to challny]

It is fascinating to the extent you are aware of it and it is a real place. Sometimes we read stuff on the internet and we have no idea whether places being referred to are real places or at least places that are what they claim to be. There is lots of research going on with lung disease and there certainly is a strong possibility there will be better treatments and hopefully a cure in time for many of us that are here. Everyday we are one step closer. Whether that comes in 6 months or six years or longer we don’t know.

Once you get your health concerns sorted out you may have lots of advice to offer to some new member that is going through what you now are so will have your experiences to help reassure someone there is light at the end of the tunnel. Don’t underestimate what ones advice can mean to a person. We all need support from time to time.

[syntax in reply to challny]

Chaliny,

Go to A&E next time you feel bad,even call for an ambulance if

you need to.Just remain breathless asnd you will get a proper diagnosis,

the doctor a ticking off as long as you explain at the Hospital ???

[soril08 in reply to challny]

in October 2013 I was laid up with a real bad bout of pneumonia, whle in hospital the consultant informed me that I also had COPD.

fourtunetly I was dischargd from hospital after 4 weeks and prescribed Symbicot 400/12 powder inhaler along with EkliraGenuair322microgram and salbutamol as a back up. Up until 3 months ago I had very little problems with my day today activities unless it was abnormaly physical.

since then I was informed by my GP that the steroid ingredient rise`s the risk of pnemonia therfore changed the inhalers, the first one, I don`t recall the name, proved to be of little to no benifit, so off I trotted back to the GP, who priscribed Trimbow.

It is only two weeks now but I find it much the same as the one before. My plan is to now go back to the original perscription, without the GP`s permission, to find out for myself which suits ME better.

Like all medication finding the one that suits you is the crux of the matter, unfourtunetly not all medics go along with this.

good luck

[kate1978]

I have been using Trimbow for around 6 months 2 puffs twice a day, I use a spacer and I'm fine with it

[Danielmystar]

I've been on trimbo since April this year I find it's helping me a lot just wish they had gave me it a lot sooner

[ceris]

Just seen a nurse today with yet another flare up of copd, have been asking for months if I need another inhaler and have been told no, she said straight away that I wasn’t on enough inhalers and she prescribed trimbow, so fingers crossed it will make a difference.

[ceris]

Hi, I have been on trimbow for about 4 months, it’s the best inhaler I have had, was having chest infections every 3weeks. When I was on braltus, no infections since trimbow, my breathing is now excellent, really hope it helps you too, let us know how it goes.

[Itsmeagain1]

Evening I was given trimbow 2 weeks ago first week brilliant did more breathing a lot better didn't even use my reliever once this week struggling had to start using reliever told my nurse since I started it my face has been red and itchy she said her and my doc couldn't see that on side effects it's on their site said keep at it see how u get on she said 😠 clearly it's not working for me takes a week that get a phone call from them any advice