Useful..from ERS:
«defined by the presence of 3 or more of the 7 items:
1. Increased cough
2. Change in sputum volume and/or colour
3. Increased shortness of breath perceived by the patient or the parent
4. Decision to start or to change antibiotic treatment because of perceived pulmonary symptoms
5. Malaise, tiredness, fatigue or lethargy
6. New or increased haemoptysis
7. Temperature > 38 »
Take care today xx
Love,
Fran
Sure a lot of people will find this useful Fran. Hope you are feeling well 😋xx
Just thought we don’t know when to take our rescue meds some time.
Trying ..hope you are ok too Joyce xx
I am ok thanks ⛄️❄️xx
Thanks for the info, do you know when we need to take the steroids?
The department of the blooming obvious! Except to some medics of course!
At least it’s out! They are now using this definition in the whole of Europe!
Well this has been the definition of an exacerbation in bronchiectasis since I was a child too long ago to say! Bronchiectasis specialists have always taken this as a given and it is in the management guidelines. Anything which puts it out there for those who don’t know is welcome as I know from this forum that many patients have problems persuading their medics that they have an exacerbation. You included I think.
Hi Littlepom,
Well as you said it is spelt out through out Europe now and it can concern any respiratory disease.
I don’t have problems persuading them I have an exacerbation, I have problems getting treated! 😃
Well in Switzerland thanks for giving me Echinacea and Zinc...when I was younger I could get better with a Lemsip but those days are over..
This resistance to antibiotics is out there as you mentioned and so is paranoia I think 😃
Honestly since the last load of doxycyclin blocked my kydneys last week I don’t know what to take anymore. I am sticking to natural remedies and see which way it goes..
Then probably back to RBH..
Have a nice Sunday xx
Fran
It is hard for most of us and often we end up finding our own way through because sadly the 'experts' are actually trying to knit fog. That's why we stick together and hold hands. Have a great day.
Pete has several of these points most of the time.
Enjoy your weekend dear Fran. Take care xxxxx 😘💖
I do too..what’s good is 3 or more you know you can take your rescue meds.
Thank you 😊 you too Carole xx
Fran 💓😘🌸
Thanks Fran , recognise this List with Exacerbations. Hope your ok with all the snow Down South or London , not sure, must watch the news soon. Love n Hugs Dear Fran xxxxx
Hi Carolina,
Not a flake of snow but it was cold and a vessel popped in my eye as I was watching the match!
Anyway going for my second sleep 💤
Wishing you well xx
Fran 💕🌸💓
Oh all too familiar dreaded exacerbations!! This should be in a list in the doctor's office. Very helpful. xx 😊
Thank you,that is useful to know the way things are worked out.....by some boffin sitting with nothing better to do,lol!
Just thought we don’t know when to take our rescue meds some time.
hope you are ok Squirrels 🐿 x
Yes, that all sounds all too familiar, Fran, I’m afraid, though crossed fingers, not lately. I’ve improved so much since moving house....away from the factory across the valley, I think. Early days though 😳
Hope all is well with you, and life in London is still going with a swing 🎡
Have a good weekend 🗽 🎭 ⚽️ 🍷 Love xx Penny
Hi Fran, yes I recognise that list only to well.. 😠 😡 Hope you are feeling a lot better and still enjoying london. 🌷🌺Majt
Hi Majt
I expect you do..for newcomers doubting really..
Quite touch and go but plodding on Majt..
Yes London makes a good break than you xx
Have a nice weekend 🌸🌷💓
Good to see that they’re standardising. I don’t totally agree with the list though; I think 7 is unnecessary and potentially misleading as it could play into the whole ‘it can’t be an infection because there’s no pyrexia’ argument. I don’t know if it’s different in other lung conditions, but with cf, I’ve always been told that the presence of a fever suggests the culprit is actually more likely viral than a true exacerbation 🤔🤷♂️
Well they do say 3 out 7 symptoms so no a fever isn’t compulsory. It can be either viral or infectious. Still as we suffer from a chronic lung disease I wouldn’t let it go unnoticed.
You seem to have touched a nerve with this helpful post, Fran....I’m thinking it’s because we’re all so troubled by exacerbations, reading the list sets our anxieties off!! Interesting!
I’ve saved the list for solid reassurance....I can flash it at my new surgery, which hasn’t got my confidence yet.
Have a good Sunday ☃️ in snow-free London....for now ❄️ Love Penny xx
Not disputing that, I just think anything ambiguous isn’t massively helpful and doctors are only human at the end of the day - I once had a paeds SHO tell me my littleun couldn’t have an exacerbation purely because she had no temp, when she actually had a raging pseudo infection. Just makes me wonder why include it at all when fever is not actually a defining feature.
Very useful Fran. I have saved this on my phone. Thank you. Take care. xx
Thanks Fran, my husband always put off taking his rescue pack until he's really poorly. I know it's a difficult decision to make and it isn't good to take too many antibiotics. This will be useful and I'll show it to him.
Hope you're still enjoying London
Corin
Hi all I'm new on here but felt I had to say something here. Please tell your husband don't wait too long before taking a rescue pack as this is what I've always done until this time. I had actually started it on the 27/12/18 but on the 29th collapsed struggling to breathe. My family called an ambulance and as soon as it arrived I was put on oxygen and loaded into the ambulance where I heard them talking to the hospital saying to have resus ready for me. I ended up in hospital for 2 weeks this time and I'm now home but on oxygen 24/7 plus I've now been told I'm a carbon dioxide retainer, still trying to get my head around it all but please don't wait too long before using your rescue pack as I ended up taking antibiotics and steroids for 3 weeks. Keep well everyone 🙂
I don't understand 4 at all. Seems to be saying that it's a pulmonary exacerbation if 2 of the 7 are in play and someone (unspecified but presumably including the patient) also thinks it's a pulmonary exacerbation. Huh? Seems to be a bit of circulatory definition involved here.
I'm my list I would remove 4 and include:
Noticeable increase in sweating, either hot or cold, daytime or night
I also operate on the basis that I have to feel generally unwell for significant periods of time to be sure it's an infection. I find it's possible to have some of these symptoms for short periods of time (particularly after waking) which then clear up and leave me feeling
quite normal and motivated for the rest of the day. I appreciate that 'feeling generally unwell" is difficult to define.
Another difficult concept but one I employ a lot is the "wait another day" concept. I often find myself thinking "Ok that's it; it's the right combination of symptoms and it's definitely an infection, but then I say - ok wait another day and let's see. More times than not the next day I'm fine and I'm then clear for several weeks or months before a point of decision is reached again. I've only been caught out once where the infection raced away from me and found me having to check into hospital to get IV meds due to out of control fever (but I reckon that was more because I had been witholding my azithromycin 3x/wk programme in an effort to get a sputum sample to show a result!)
Thanks for your info HappyLondon.
That’s really informative, and I shall use it from now one. I am one of those patients who cannot get an action plan for a flare up from my gp so I will benefit greatly from your list.
It puts everything into perspective.
Thank you again.
Thanks for this list, it is validation. I have tended to let myself get sick, since I tend to push myself. After a second hospitalization, I really want to avoid that. Still, sometimes convincing my Dr. can be a problem. I am certainly going to copy the list for the next flare.
I too can get some night sweats along with a progressive profound fatigue. I would also add an uncharacteristic loss of appetite and dislike of foods. Like others have mentioned, I get mini-exacerbations that come and go. I do take some natural supplements, even some garlic tea (short term only) if I feel I am coming down with a cold. I have also take olive leaf extract, both show some action against pseudomonas-- however, in the end when you need an antibiotic no herbs are enough.
Again I want to thank everyone here. I feel so much less afraid and alone than at the start of all of this. Have a lovely Sunday all.
I use portable oxygen, with a conservator unit in my backpack, for help with my asbestosis. For the last week the cold weather has made it bleep all the time I’m outdoors, causing concern among people around me. Using a cannula, and keeping my mouth closed avoids the need to breathe in very cold air.
I have learned that this is a regular problem with these devices; anyone else hit it, and can offer a solution?
Thanks Fran. It’so hard to judge when it’s an exacerbation. Con at Brompton told me to judge it by how bad I feel. I haven’t had an exacerbation for a year, but feel lousy, whooping coughs,headache, thicker coloured mucus. Can I get rid of it without abs?
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