Hi I have posted on here about my overuse of Salbutamol and my GP practice asthma nurse wanting to stop it! Big red flag and a lot of stress for me.
Anyway long story short agreed to further investigations and tests. Peak flow best is 250 - 200 I feel ok on this with help of salbutamol in the day. Apparently been like this a couple of years, before that I was between 380-350. I also take seretide 500 twice a day, I did go down to 250 but that increased the salbutamol usage.
It is now being queried, I may have either obstructive asthma where reversal of airways isn’t fully managed or developed asthma - COPD overlap. I have read some of the research on the latter and it is confusing and seems a bit of a mine field. I have never smoked ever and some papers say it is a must risk factor! Other papers say uncontrolled childhood asthma is thought to be a risk, but evidence is not clear. I would fit in that category.
I have been given Genuair, I just cannot get on with it and have stopped taking it after 5 days. It is interfering with my voice and after a few hours of taking it my voice breaks and becomes very very broken and croaking enough to interfere with my work.
Does anybody have experience of either a diagnosis of either the above or used Genuair and had problems? I 100% have asthma it is not a misdiagnosis I’ve had it since I was four, although only diagnosed officially at 12/13 years old. I am now 57 but over the last few years the symptoms have become more persistent, restrictive in movement and exercise, rather than acute and hospital admission. The last hospital admission I had was about four years ago.
Is Obstructive asthma progressive disease like COPD or does it behave differently? Research suggests Asthma-COPD can progress more rapidly 🙁
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Loulou9000
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Hi, sorry you have had such a struggle for so long. The potential diagnosis your g.p surgery have given you sound confusing.
All asthma is obstructive, it is wether that obstruction is reversible or not which supports an asthma or COPD diagnosis. COPD is obstruction without reversibility, however you can have the two overlap. It is true COPD is more common in smokers although not exclusive. If you have never smoked, it lowers your risk considerably.
Have you had any lung function tests such as spirometry? COPD cannot be diagnosed without full lung function tests.
Are you under a consultant? It sounds to me like your g.p surgery are out of their depth and throwing random diagnosis at you! A consultant will have access to a much wider range of meds and give you full lung function tests to help support any diagnosis.
It is highly possible your asthma is just difficult to control and you just haven't found the right medication yet. If you are only under g.p care there is only so many meds they can offer.
I haven't had experience with Genuair, but it looks like it is a dry powder inhaler which some people just don't get on with. I personally don't do well with dpi's.
If you feel well it is possible your lung function has naturally declined, however if you need salbutomal regularly to feel well this shows that your not controlled.
By what you have said I would ask your g.p to refer you to secondary care and take the g.p diagnosis with a pinch of salt.
Hi Melanie1989 thank you for your reply, I’m glad I’m not the only one confused. To be fair to them, I am not diagnosed yet, these are possibilities from the asthma nurse.
Spirometry not being given at gp practice because of COVID restrictions. I have been referred reluctantly to chest clinic, where I guess I will get lung function tests. I am not sure how long the waiting time is.
I have been for chest X-ray and blood tests last week at local hospital despite my concerns not having had a COVID vaccination. Ironically got called for that two days later! I have also been given Genuair which is licensed for COPD so feel they are jumping the gun a bit! Anyway work and voice higher on my agenda than using this inhaler at the moment.
I think you are right and my asthma is not as controlled as it could be. Something else may be going on, but I find it hard to agree it is COPD because I have some days I’m really well. Also when I am obstructed the salbutamol really works and brings me back to my normal levels. I just find it hard to maintain for long.
I never have a cough or phlegm unless I have a chest infection. My chest feels tight and constricted often and I always wheeze when trying to breath, with difficulty breathing out. I feel the constriction in my upper chest like being sat on which causes me to gasp for breath or sometimes like a band being tightened around my chest and I feel I am suffocating. This tightness is relived by the salbutamol.
I guess I need to wait and see what the consultant says, I am just a bit nervous if they change the medication and I get really unwell very quickly. It has happened several times before and it takes awhile to get back to where I am now. I know it could be better controlled but I am able to live a relatively unrestricted life.
That's good that you have been referred and hopefully they can get to the bottom of things.
The fact that salbutamol helps and the difficulty breathing out definitely points to asthma issues. I would let your g.p know about the inhaler as they could maybe try you on an mdi inhaler, as it is more than likely the powder irritating you.
Medication changes should still include a steroid so shouldn't upset you to much, they may just want to try an add on to what you already take.
Even if it was copd (which at the moment doesn't seem likely) which is progressive; many people stay at the same level for years, so isn't always doom and gloom.
Hopefully you don't have to wait to long for an appointment and you can get some clarity. I would also recommend giving the AUK nurses a ring as they will be able to suggest meds and explain things much better than I can 😂
Hi just wanted to say that sometimes things in theory for COPD can help asthma too - often those on Spiriva for example are actually on the COPD version not the asthma version. I know you've not got on with that particular drug but something in theory for COPD might not mean they've barrelled into a label or something.
Definitely go for the tests - you need the expertise of specialists not just an asthma nurse (that sounds rude - I don't mean it to because some ANs are fabulous and have better than doctors... but you need the level of testing and breadth a specialist should be able to give). It doesn't have to be forever - you never know, they might stabilise things and then to will be well controlled.
But do tell them upfront about your fears/past experiences. Hopefully they'll keep that in mind when changing stuff - ok they'll probably still want to try new things but they need to do it knowing of your apprehension.
Thank you twinkly29 I will be honest with the consultant and let them know I do fear a medication change. I may not be controlled but I will say it is the most stable I’ve been without hospital admissions this last four years. Before I would probably have better remissions, but very serious flares. Now I have less remission but no serious flares which means I can live a bit more of a normal life.
It would be nice to have less restrictions day to day though, so prepared to give it a go. Just got this fear i may not get through a severe attack, if the stability is taken away.
Hopefully it won't take much to get to the point of control. As Melanie suggested perhaps one extra add-on would do it. If that's reassuring at all I don't know - the what ifs can easily take over especially with past experiences lurking though!
I have been trying to convince my GP my asthma is ACOS - Asthma COPD Overlap Syndrome due to the amount of phlegm and infections. With every infection it is antibiotics and steroids, which treats the symptoms but within a few weeks I am sick again.
Has anyone ever raised the possibility of bronchiectasis, B_Asthma? I know it's often overlooked and is a possible cause of phlegm and repeated infections. There are many over the BLF forum who are very knowledgeable about it. It sounds like you really need to get some proper investigations (but very difficult to do at this time). Good luck.
Hi Artichokes I know you have replied to B_Asthma but my last hospital visit they queried bronchiectasis. The GP after the admission dismissed it out of hand. I have a different GP now I may raise this with him, I had forgotten about that.
Trouble is you think all this gets updated onto your notes but since the COVID I have found out not all my history is logged and some of it recent not just historical.
I can relate to a lot of this! I've really been struggling with my asthma recently (like you, I've had since childhood but wasn't diagnosed for years) so I went to see my asthma nurse last week for a review. To clarify, I had Covid-19 in December so I was worried if this had long-lasting effects on my lungs. She instead said that I could have brittle asthma or COPD! This was obviously a big shock to me as I'm only 20. I'm going for an x-ray this week to clarify things a bit but let me know how you get on with your asthma x
Equally it could be that your more recent symptoms ARE related to having had covid. Not asthma, COPD or anything else. Covid can cause a lot of breathing symptoms that are very similar to asthma etc but also not dangerous (just really annoying but often respond to breathing techniques). Nor does it being ongoing mean the lungs are actually damaged - it's more the way we breathe can be screwed up rather than there being anything underlying physically wrong. All breathing symptoms post covid are not necessarily someone's pre existing respiratory condition.
However - this should be for specialists to fathom - it shouldn't be for ANs to throw in potentially scary (to the patient) ideas. If it's not being managed at primary care level, they should refer.
That's exactly what I thought and was why I went to my GP initially but she focused more on the possibility of COPD etc instead.
I do work under some respiratory consultants and was wondering whether I should bring it up with them - hopefully they would be able to give me some more clear-cut advice about this rather than my AN. Thanks for your advice.
Yeah she seems to think it's caused by passive smoking mainly which would make sense I suppose. I had to buy a pulse oximeter and my oxygen level last night was 87 which isn't great I don't think? Thank you xx
It was after I had walked about 2 minutes from my bus stop to my house. I did think it seemed a bit low but wasn't sure if that just happened when you walked? I wasn't told no but I do work in a hospital luckily lol so I'm in the right place if anything happens x
Thank you all for you replies! I feel a lot better now and you have reminded me to wait for the diagnosis from the consultant, rather than worry myself with the worse case scenarios that may never happen. I let you all know how this progresses.
Itselenax that oxygen stat is very low? My last hospital admission I was 88, I have been told when I drop under 92 I must make a dr’s appointment and under 90 go to a&e. But my oxygen only drops with chest infections, asthma attacks without obvious infections it usually sits around 92-94. However normally without feelings of restriction, it can read anything from 98 to 94. When I go below 90 which is always when infection present I can get some air through without assistance. Some of the non infection attacks I cannot breath and get very distressed and getting air without help is really hard, but oxygen stats will be higher.
Is it different when it's after walking for a few minutes though? I wasn't sure if that had affected it. I'm going to ask my respiratory consultant that I work for just to be safe. It was 98 the day before.
It could be just that the pulse ox wasn't reading correctly at that moment? All sorts can do that, cold fingers, nail varnish, probably the fact there's a y in the day of the week...
Yes I'm hoping it was a fluke, I am going to try it again tonight when I get in, forgot to do it this morning unfortunately. It probably was the latter reason lol!
90 with 1 lung! This has made me sit up and stop feeling sorry for myself! I will face whatever they throw at me and start to look at it more positively! Deep down I know I cannot keep relying on the amount of salbutamol I am using. It is time for further investigation. Thank you and your inspirational grandmother!
I don't for a minute think you're feeling sorry for yourself. You've been really unwell and, quite rightly, have concerns. Dealing with illness IS scary stuff and we all deal with it in different ways. Really hope they can get to the bottom of it so you can get some control and quality of life back. x
I'm on Eklira Genuair dry powder and my PF is around 250. Yes, it can affect the voice and I no longer sing because of it. As long as I gargle after taking an inhalation my voice isn't too bad but it's a good job I'm not a teacher or having to use my voice for long periods. I've found that keeping hydrated helps (I'm not great at drinking enough fluids) and avoid long periods of voice inactivity. As for the reduction from my usual 450 PF, my consultant says it's all down to weight and I must admit that things are better when I lose weight and if I can undertake moderate exercise. I have found that seeing a respiratory physiotherapist has helped me with breathing and i now get a much better dose of inhaler because of that - dry powder inhalers need good technique and I have to focus otherwise I just don't get a full dose effectively.
NB I was on Spiriva but it made me really ill and I ended up with hypertension in a really short time, hence being on Eklira Genuair.
We're all different and cracking our own asthma code is challenging, especially if things change for no good reason.
That is interesting about the weight Poobah. I have put on a couple of stones over the last three years due to job change from active to desk job, but mostly over the last year with exercise restrictions and me shielding unofficially (won’t go there) since first lockdown started.
I am trying to watch my diet and eating healthier for the last few weeks since lockdown easing was announced in readiness of joining the office again. Trouble is it was much easier putting it on than getting it off!😊
Lockdown has certainly thrown up its own challenges, keeping the weight off being one. But since Christmas I've been sticking to my guns and feeling much better for it. I'm an expert in putting on weight and hate dieting, but it's the only thing that works. 😬 I've never suffered from a compulsion to diet, that's for sure.
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