I hope you'll excuse the long tale.I have been using inhalers for COPD for well over 10 years now and up until recently I was using Seretide 500 and Seebri to manage my COPD.
Anyway, earlier this year I had a video conference with a consultant from the Royal Brompton Hospital and it was very good and left me feeling like I may well have a relatively "Normal" future, perhaps without my symptoms getting worse, even though he has diagnosed me with stage 3 Emphysema.
The thing was, at the time I spoke to him, he said that he wanted me to change to using Trimbow as an alternative to the Seretide etc., so I started using it and initially it was OK but slowly it started to feel like I couldn't get the powder into my lungs properly, so I saw the respiratory nurse and told her that I had felt better when using the Seretide, and she almost "Told me off" by saying that I should keep using the Trimbow and if I went back to the Seretide, then there was nothing she could help me with, 😳😳.
Anyway it got to a point where I just started using the seretide again for about a month or so, although it didn't seem to make me feel better, it did feel like the medication was getting to my lungs, anyway I saw my GP after a couple of months and told him I'd changed back and he said that it was better for me to use the Trimbow and that, that was what he wanted me to do, and it seems like everyone wants me to use the Trimbow even though it doesn't feel right.
Thing is I'm at a point where I want to go back to using the seretide as I feel like I can get it into my lungs and when I used it before the change my breathing was going OK and now after all this change my breathing seems worse and I don't know what to do, I just wish they hadn't started messing about in the first place.
Any advice would be very welcome, thanks for looking.
Written by
rocco1504
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I have found that improvemets arent always what they are supposed to be . You have to give it a good trial though and then tell them again how you feel after using it . Record it each day write it down saying how it can affect you
it wouldn’t hurt to watch a couple of videos on YouTube, or to check with your doctor, to insure you are in fact using it correctly as that can certainly make a difference.
My doctor has always allowed me to use the inhaler I feel most comfortable with. He has had me try different ones but will allow me to go back to what I was on before if I feel it works better for me. He doesn’t always agree and says this should be better for you than the one you are taking but allows me to go back if I feel it works better for me.
I can’t imagine why he/she would be resistant, as even though he thinks it should be better, it sometimes isn’t better for certain people. No one can judge better than you as to how the inhaler affects you. Do they really think you would want to use an inhaler that you found less effective? Surely they would want you to use an inhaler you feel you get the most benefit from and you really are the only one than can assess whether your breathing is better or worse with any specific inhaler. I can’t imagine that they would deny you the inhaler you find is the best for you personally, and I would just insist they allow you to back to the Seretide.
Agree with the idea of recording how you feel every day after using the Trimbow and measure your peak flows and record that too at set times every day. If you have Seretide still do the same with that. Then you have some evidence to show the doctor next time. Did the doctor say why particularly they wanted to use Trimbow. I hope it is based on medical grounds and not on cost, i have no idea though about the comparison costs of the two inhalers., but surgeries and needing to manage their drug budgets i guess.
Hi personally I would contact consultant or respiratory team and tell them it doesn't suit you so if they change the gp will have to honour it. I have been on seretide for a while now 8yrs approx starting on 125 then a 250,at a asthma nurse review and they changed it to fostair which I trialled for 3months and felt awful and breathless. Needless to say seretide suits me and I now have it always
A change of technique helped me . After 20 years of inhalers finally shown Trimbow video on their website. With an aerochamber. The technique made a great difference to me. I do not think Trimbow is cheap.
Gosh it sounds like a load of bullies instead of medical people trying to help you . We are all different and what suits one doesnt suit another. If you feel that Trimbow isnt right for you then you are right to ask to go back on Seretide. I would do as Boxermaid says and go back to your consultant and ask them to change it back x
I have never found powders get very far down my throat,much better to use an aerosol and a spacer for me,i can feel it getting right down to the lungs.
One of the things I like about both the Seretide and Seebri powder inhaler is that they are designed so that you can actually get the medicine where you want it, unlike the Trimbow that doesn't allow you to form a seal between your mouth and the inhaler.
Hi, years ago a specialist changed me from fostair to seretide. Within a week my breathing was much worse. When I saw him again I told him and asked if I could go back to the fostair. He agreed, saying that we were a partnership and that he needed to consider how I felt. I hope that you get your problem resolved.
My GP and nurse sound similar to yours. I didn't really get it, but they were quite aggressive about Trimbow being the best medication for me - personally I think I've lost weight on it, but that was ignored - there's a definite correlation between starting it and losing weight.
Please take the good advice of people above. I just wanted to let you know that I sympathise with you!
My mum has copd and was switched to trimbow late March. Initially she didn't notice much difference, but within a month her wheezing had deteriorated greatly and she had attacks of extreme breathlessness (worse than she had ever had before). She eventually ended up going back on her spiriva and clenil. However by then she was having a bad flare up, for which the gp refused to giver steroids. By the time another gp gave her steroids and antibiotics, the flare up was so bad she ended up hospitalised on oxygen and nebuliser. She feels much better now and refused the consultants requests to put her back on trimbow. I'm convinced it must be cheaper, as they are all pushing it! She's now back on clenil and spiolto respimat, which seems to be working for her. She wishes she had never taken the trimbow and had came off it quicker.
That's kind of how I feel, it's like it's just not getting into my lungs the same way the Seebri and Seretide do, I'm pretty sure that the consultant said that I should "Try" it, and wasn't forcing anything, but my local medical team seem to be really pushing the Trimbow.Thanks to everyone for the replies, I've been looking for somewhere where people understand what we go through.
Hi, as previous replies mentioned it is a partnership between you and your GP, they need your inputs to decide what they think you need. You know your own body, I went through six inhalers before I found one that worked for me although the hospital did change it once and I had a conversation with my doctor and we changed it back. Your body your choice. Good luck. Kevin
What would be the point in you saying your original treatment works better after trying a new one ... you can't always tell for a start .. it wasn't you that asked for change so insist sorry but the new one isn't working as well and you'd prefer to stick to one that does .. After all you are the one that suffers, for them it's just a bit more paperwork... I am with Royal Papworth Hospital and I have always been asked how I'm feeling about things and nothing is too much trouble ... I have been tried on Fostair and said it didn't work as well as Seretide and I've been allowed straight back onto the Seretide to the consultants there their patients opinions and feedback matters.
I understand there are difficulties with supplies on some medication so they might have to try something else but if that is the case, they should be honest and tell you.. and if there is no reason other than they want to try you on it , they have and it isn't working so what do they have a problem with it.
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