I went for my 30 minute COPD Review with the nurse.
Right - She started talking inhalers - I though "Wait for it) and yes, she said I probably would be better on Trimbow rather than three inhalers.
I told her I was happy with Ventalin, Ipratropium bromide and Fostair inhalers.,
She mentioned Trimbow again - I said I have seen/heard how it's affected other and I don't want it, anyway - I said with AF than all at once could be a trigger. END
So she weighed me 76 KG and she took oximeter reading 92 - Then bye bye - My 30 minute appointment took just 10.
She was nice and polite
When I got home I checked on online test results and she had put my BMI at 32 - Yes 32 - It is just on 25 in reality. I looked in mirror and def did not have a BMI of 32 and a bit.
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There always making mistakes on peoples medical records it's cause there in a hurry. I had an appointment on mine that I never even went too or arranged? So obviously big mistake x
Well listen to this I had many failed smears lol long story anyway I got a letter today saying that sample they got 😕🤔 was negative and I am low risk for cervical cancer which is great but I never actually had a successful sample taken so bit confused and relived at the same time 😆
Oh dear fancy getting your BMI wrong Ern, not good. Pleased you stuck to your guns and rejected Trimbow. With AF no triggers wanted thank you. Wishing you well. Xxx❤️
Thank you. Reading on here I was a bit wary about her motives, but with a 30 minute slot, I thought a proper review - We I did not want Trimbow, I am happy with what I have. Wishing you well also Carole xx
Maybe she got your weight wrong as well . I was weighed at my hospice this morning 39K which converts to 6stone 1 . Yours at 26K would have to be around 4stone.
I am glad you posted - I should have put 76 and that was with coat, shoes and jumpers, she had my BMI at 32 + which is obese, My actual BMI is about 25 - She made a mistake the other way. Would have a been a few stone heavier,
I not even had a emphysema yearly review, they couldn't give a dam..I have severe emphysema and no support from my gp at all, when I last saw a nurse year and half ago she new nothing about the inhalers! Absolutely NOTHING..This is a serious condition you wouldn't think so the way people act, guess it cus the surgery don't make any money from copd /emphysema patients.
Sadly, this is/has been true of my surgery also. It took me being critically ill in hospital for them to take me seriously. I had a "review" with the respiratory nurse not long after I came out, I asked her if she was new "oh no, I've been here for three years"! I had never met her, been invited for a respiratory consultation, nor even knew of her existence! I was flabberghasted! It has got to the point now that I only really use the surgery for minor illness and prescriptions. I use my community respiratory nurses, who, luckily are fantastic xx
I have to say Larie my surgery has been really good with me - I think doctors. nurses are pressured by managers. No way would my surgery force me - Down to cash I reckon;
Hi there, if you live in the UK just now the NHS crisis is severely impacting the dr surgeries.I have a few severe illnesses that are going to cut my life very short.
So, what I do is call for an appointment every month or month and a half.
I usually get asked to come in within a couple of days.
I have been really struggling with chest and kidney infections for most of this year, because it seems to only go away with the more expensive antibiotics.
Anyway, my point is, that you need to be the squeaky wheel now.
You are quite prone to chest infections when you have emphysema. So you need to get checked monthly I would say. But talk to your dr about it.
I feel terribly ill most of the time so it's hard to tell when I feel worse than usual. Now I have decided that's for the dr to figure out!
Get squeaky now!
Warm compresses on your chest will feel nice if you feel up to it. When I started into nursing we used to do all kinds of warm poultice that were really soothing for the chest. I don't know if you can still get those in hospitals.
Remember that you are not the problem. The problem is the tory government severely underfunding the NHS.
It doesn't seem to be anything you say they write thier own version to tick the boxes.I have mine on 24th and just had respiratory at hospital which they were happy with me spirometry on 6th Dec to confirm that I am OK. If nurse tries to change my meds whoa betide her lol
I think doctors and nurses are not to blame, they are I am sure directed to prescribe what managers wish - We have had multi inhalers years ago, took of them and now we get one back again, and I don't want it for one.
Nobody knows your body like you and glad you turned the trimbow down. You only know what works for you, shame they never listen properly. Good for you 👍 😉
I was at the drs because I was told my my allergist in Canada to get an antibiotic as soon as I caught any colds or flu s. I have asthma and I just get bronchitis if I don't get the antibiotic....All the lovely extra secretions that hang around attract infections.BUT... all I got from drs when I asked for the antibiotic was that researchers have proven that upper respiratory infections don't need antibiotics.....
I was told that so many times and had to tell them everything over and over again.
One day I went in to see a dr I hadn't seen before. He just said No. Wouldn't listen to me
I was upset, ill and frustrated.
He said ...I have been a dr for 30 years and I know what I am talking about!....
I accidently blurted out.... well I have had this body for 58 years and I know what I am talking about!...
He was not happy but he started to listen to why I needed the antibiotic. Oh you have asthma! Ok then!!! Here is the prescription.
I am so sad that I have to be in an argument every single time... except when I can get in to see my favourite dr, she remembers me and listens to me.
I am well aware of how bad it is to get antibiotics too many times. So I make sure I only get them once or twice each year at the very most.
I have to weigh up the damage that is done to my body by chronic bronchitis and brittle asthma without an antibiotic against waiting till I get really really ill and have to take longer courses of several antibiotics.
Hi, as I was born with PCD I now have annual review with my consultant, I’m weighed and height checked before hand, and see several medics. I’m on continuous antibiotics and other medication, and nebulise twice daily. Haven’t spoken to my Gp for two years, but can contact consultant if have problem. Had Iv antibiotics 15 months ago, worked but caused balance problem, and wrote to her about this so hopefully on my records that can’t take that medication. Do you ever write to your medics about problems, so hopefully goes on your record? Good luck, best wishes, Jean
hi good morning i have had copd since 2013 i getting woser now i feel ill on morning i am doing peak flow a lot morning { 250 } on peak flow machine told not good i am 5ft 5 " weight 13 stone they say that good but my breathing is still rough i on blue inhalers 3 time a day all what she said i lost some wait carry on what you doing / they put me in our local gym / it gets me out of house walking not good i drive god day to you see in 6 ths / they are not bothered as long as something been put down on computer all the best ghoust rider
If your blue inhaler is Ventolin you can take it more often as needed.If you have problems getting seen by a GP. Call 111 after your GP closes on weekdays or on the weekend.
I had to call 111 because my GP wouldn't talk to me when my bp was showing in and around 220/105 or so.
I only got told to relax and put my feet up, the third time I called in for an appointment, I had been monitoring my bp for just over a week. It never dropped lower than 165/100.
I could barely see and my head was pounding.
I called my daughter, who is a trauma nurse, and I was crying to her that I didn't know what to do. After a kind but firm pep talk .. reminding me of what I already knew, but hadn't been well enough to remember, I called 111 and they sent an ambulance.
You have to make sure that you get the care you know that you need nowadays.
It's hard to fight when you are feeling so ill.
The NHS is struggling without the funding they need, but the nurses and drs want to see you and help you feel better. If you don't get help from your GP call 111 and tell them how ill you feel.
hello l have just had my yrs review with my copd nurse l must add she is the most understanding nurse ...she sits an listens stirs me in the right direction doesnt tell me what to do but asks me if feel ok with it ...l have been on trimbow for quite a few yrs now also my emergency inhaler ventolin ...it works for me and no side affects ...hope this helps
Hi, I had a review last year (no spirometry) over the phone . Lasted about 15 minutes asked very few questions and gave me a score of 16 which they put on my records , looked up previous reviews and scores ranged between 25-30.so I complained online and was called within 10 mins had another review over the phone took 25mins and my actual score was 40 . I know some will say it doesn’t matter, but it does. I have FND but it was not on my records and if it’s not there you don’t have it. You’re so right we know our own body’s and usually have the the right information, doctors just need to listen to us . Sorry it’s so long.good luck in the future. Kevin
There is a very reasonable direction of travel to simplify peoples inhalers.
There is good evidence the more inhalers people have to take that they dont take all the drugs consistently (take one of the 3 on a morning for example) and that there are more errors with multiple different devices (just as its easier to make mistakes when you have different cars to drive eg work vs own car)
There is also a cost issue- its both more costly to the environment and the NHS directly to have separate inhalers.
Your current inhalers cost around £75pcm whereas (surprisingly) the newer inhalers which have evidence of being better than three inhalers are also less expensive (£47pcm)
They have never been directly compared but database studies do suggest the extra £30pcm for your current inhalers is also linked with higher chance of flare ups and/or hospitalisations (probably for the above reasons inhaler technique challenges/ forgetting etc). ie sticking as you are is worse and more expensive
So sticking on your current inhalers is v bad value all round when better is available at lower cost. Im all for paying extra for better but definitely not for worse.
The NHS also notes; The carbon footprint from 1 pMDI (200 doses) is estimated as equivalent to a 100M car ride. So less inhalers is good for our planet/ the air that you breathe
The AF mentioned with Trimbow; I haven't seen this and it would be hard to spot as a specific cause as AF is v common in COPD anyway
The drug most likely linked is formoterol which is already in your fostair
hence I would fully support your nurses attempts to get you a better treatment, that's simpler and more cost effective
That's what I would have done if you came to my clinic too
If you have a particular concern over Trimbow there are other "triple inhalers" available- which is what i would have offered to you as an alternative if I was seeing you in my clinic
If you feel the COPD reviews you are having don't help perhaps you can discuss that with the (hard pressed) staff so it works better for you next time.
we of course cant do a better job for you if you don't tell us what better looks like for you
I am sure the nurse would be horrified to see someone write
"It is - Really was a complete waste of my time and theirs . Not the first time either,"
Please be kind it costs v little
wishing you all well over the winter; fingers crossed its a "flare up" free one for you all
Sorry but you doctors have no idea about the the side affects of your own medications. I was given an Fluroquinolone antibiotic ( Ciprofloxacin) 12 months ago the side effects of this have been devastating for me and thousands of other people that have just been left with ZERO help other than a vacant stare. If you are genuinely interested please visit quintoxuk@btinternet.com or quintoxsupport.co.uk
They would love to have a doctor there more than anything.
There is ongoing anxiety about infection control (I suspect) plus spiromerty needs quality controlled/ training so likely a backlog.
Potentiality controversial but I am not convinced of the value of spiro on an annual basis in milder patients who are stable (ie those mostly seen in primary care). REALLY important at baseline to help confirm COPD but its a lot of work that arguably could be better spent listening to patient concerns/ (see below!!) or inhaler technique or simply seeing more patients
I ahve almost never had a hospital referral saying this persons spirometry has dropped but they are perfectly well (as mcuh as can be expected with COPD) with no eaxcerbations but we would like to know why the lung function has dropped a bit mre than expected
Benchmark normal lungs after 30 years old/ (young!) drop 30mls per year (6 teaspoonfuls). COPD lungs age perhaps as much as 60 mls per year
This varies on a day to day basis too (as many of you know better than )
In trials of new inhalers we have to go through massive training, use only one machine, at exactly same time of day to there are stability and accuracy across the study sites
This will not happen in any clinic so the spirometry on annual basis is to my mind something we may not "keep"
Perhaps it is better targeted at where there are increasing symptoms, doubts over diagnosis and /or repeated flare ups (though these are all meant to be triggers to consider referral to hospital anyway)
There are community diagnostic hubs being developed England only
Well the powers that be made multi inhalers a way of life. not patients demanding.
My first treatment was Duovent and that was stopped in favour of Combivent which was a good option containing (ipratropium / albuterol) - Both decent inhalers, Combivent stopped it is said because of carbon gasses,
However both the perfect treatment with steroid inhalers am and pm. ONLY.
Trimbow has Glycopyrronium Bromide as one ingredient and not good with certain heart problems including rhythm.
Formoterol in Trimbow is 5 micrograms - The safe limit is 42 micrograms - People with an acute exacerbation don't count the doses, most take what is needed for ease, not a drug that should be in a reliever concoction iMO,
Carbon footprint - is down to the type of inhaler as much as the drug - Example
Budesonide Easyhaler Budesonide 2.37 to 4.75 - Annual CO2eq (Kg)
wasting money in any part of the NHS is best avoided
Its not just the inhaler itself; those on complicated regimens with multiple inhalers are more likely to have flare ups so any closed triple inhaler would be worth trying
Thats why they offered you trimbow as its got a long acting drug shown to be better than ipratropium
You may feel it causes AF but as stated this is not my own experience of using such treatments, its not seen in a study of 21,000 patients (on some of these type of drugs) and AF is seen in ~20% of COPD patients anyway so seeing it directly due to one new inhaler pretty hard to spot.
Of course if its hard to be sure me not seeing it in my clinic needs back up; here it is
Results: A total of 23 articles, comprising 21,238 participants, were included in the analysis. FEV1 values were significantly different compared to IND/GLY and single bronchodilator therapy (LABA or LAMA), with the MD 0.11 L (95%CI: 0.10-0.13, P<0.01). Hypertension was more frequent in the IND/GLY, than the single bronchodilator therapy group, although this difference was insignificant (IND/GLY vs LABA, RR=1.88, P = 0.09; IND/GLY vs LAMA, RR=1.42, P = 0.08; IND/GLY vs LABA+ICS, RR=1.85, P = 0.23). In addition, IND/GLY did not significantly increase the risk of myocardial infarction (IND/GLY vs LAMA or double therapy, total RR: 1.49, 95%CI: 0.72-3.08, P = 0.28), atrial fibrillation (IND/GLY vs LAMA, RR: 1.62, 95%CI: 0.64-4.10, P = 0.31) and heart failure (IND/GLY vs LAMA, RR: 0.40, 95%CI: 0.07-2.33, P = 0.31) in COPD patients.
If on an individual level you think that's not right for you as always fair play but the nurse was trying to give you what is within national and international guidelines due to evidence its better than a combination such as (steroid and long acting beta agonist) fostair and ipratropium
My point therefore about you feeling your COPD review " was a waste of time" stands and you posting this might influence others to avoid treatments which are guideline recommended
In my region we are asked to consider trimbow powder or gas versions. trelegy once a day dry powder ; this is similar across the country with trixeo being an option also emerging
This graphic might help show your nurse was trying to do their best for you based on a large number of trials leading to the guidelines
My view on my GP - She is the best, she supported me and got me treatment others should have done.
The nurse was following guidelines - I have made that clear in this thread.
I looked at Trimbow and heard people with side effects, I have AF and a history of VT - I don't want VT back in my life
When people are ill and some very ill with lung diseases - I think whatever gives them relief, they should have,
I agree 100% the nurse was following "guidelines" - again.
I am not trying to put anyone of Trimbow, if they are happy and works for them, no problem and up to them.
If the guidelines offered me an inhaler with three tried and tested drugs - Salbutamol, Ipratropium bromide - i would have no problem at all. Over the years it's been good for me, why change?
This was face to face? I recently had a COPD review with our Practice but it was over the phone again. I am due a hospital review too and this will be over the phone.
I have just done a back calculation - if you are only 5ft tall then BMI 32.4 is correct. You can do your own check here: nhs.uk/live-well/healthy-we...
At my last review, before covid, the nurse put my age as 34 and told me gravely my results were not so good. I asked for a print out of the results and took another look at them later. Then I saw my breathing had improved greatly for a 65 year old. I've not yet had a chance to correct the record.
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