Flare Ups

[XS1100]

Hi, I'm new here so apologies for my question. I was diagnosed with emphysema 2 years or so ago and I still struggle to know when I should be taking my rescue pack. Weirdly I often feel that I'm doing something wrong by using my rescue meds, possibly because they sit in a drawer at home and it's up to me to self manage. A flare up for me is when my chest becomes increasingly heavy and tight, my cough is dry and my breathing starts to play up. My problem is that I worry about being too quick to use my rescue pack. I have tried talking to my GP and my respiratory nurse but I can't seem to explain myself very well to them. I imagine that everyone has their own flare up signs but any advice on what is and isn't a flare up would be most appreciated. I hope that all made sense. Cheers

[Lol1944]

As soon as I get the symptons you mention I immediately star on my prednisone. If phlegm turns green I add my antibiotics. Every single exacerbation causes lung irritation and the object of the exercise is to stop such irritation in its tracks. If there is no noticeable improvement in four days I then start with my nebuliser four times daily with a gradual reduction once there is an improvement. Over the past 16 years I have learnt that a delay in starting my rescue pack usually has resulted in a visit to the local hospital. Even now, despite my experience in dealing with these incidents it is only a month ago when I delayed starting my rescue pack for two days because I was due for a long awaited ct scan. Because of this delay I was transferred direct from my ct scan to the admissions unit. Fortunately I was allowed home at 11.30pm having explained that it was my fault entirely and I was quite capable of recovering at home. SILLY ME but I was determined not to miss the scan appointment.Always be sure to ring your gp and have a replacement rescue pack delivered pronto.

[XS1100 in reply to Lol1944]

Thanks for the reply and for helping me get a few things straight in my head.

[2greys]

This link may help you.

blf.org.uk/support-for-you/...

[Marie__ALUK Partner British Lung Foundation in reply to 2greys]

This is great 2greys, just what I was going to suggest!

[CDPO16]

Hi and welcome, XS1100.

I was diagnosed with emphysema 7 years ago and still sometimes wonder when to take my rescue pack. That said, a flare up for me is usually exactly as you describe with the addition of my reliever inhaler having little or no effect. I can very much relate to your feeling of sometimes taking the rescue meds too soon as I have done that in the past when it soon seems to be that I was just having one or two 'off days'.

Pre covid, I could phone my GP surgery, get triaged, seen within a couple of hours, my chest listened to and then be advised on what to take. Sometimes I would be told that there was poor air entry into my lungs and just to take the pred or sometimes I'd be told that there were crackles at the base of my lungs and I was advised to take antibiotics as well. Now it is just a phone consult so the decision is based on what I tell the doctor or nurse. If I make my own decision I just take the pred and then notify my surgery but having a face to face check up makes a big difference as, unlike Lol1944, I never cough up any phlegm.

Sorry for the waffle which may have been of no help at all!

[XS1100 in reply to CDPO16]

Not waffle at all. The info you and others have given is really appreciated. You hit the nail on the head with mentioning the "off days"...exactly what I've been trying to get my head around. Thanks again for your reply and the info.

[CDPO16 in reply to XS1100]

If you get your head round it don't hesitate to let me know 😁. I have an action plan which is of little help as it includes discoloured phlegm which I never have. Seriously I wish you well.

[Bkin]

Hi XS - ask your doctor for a copy of :

"Your COPD action plan, for guidance about what to do when you are having a flare up and when to use your rescue meds / emergency pack"

Just say the words in "bold / quotes" above when you get your telephone appointment.

You should have been given this when your emergency meds (anti biotics and prednisolone) were given to you.

If you are just talking about the rescue inhaler (blue inhaler), you take that any time you feel your airways have closed when breathing becomes more difficulty (check the info leaflet that comes with the inhaler)

All other prescribed inhaler meds as instructions on the lable for the medicine prescription and in the information leaflets that comes with the each inhaler or medicine.

Hope you are soon feeling better and more confident and clear on when to use your prescribed medicines.

Best wishes BK

[XS1100 in reply to Bkin]

Thanks for that. I've never actually been told anything about an action plan so that's really good to know. I'm fine with my inhalers etc just the when to use the rescue meds/emergency pack. Thanks again for the info, on to my doc now.

[Bkin in reply to XS1100]

Great

[Bkin]

If you can access pdf documents. here is a link to advice given from Bristol NHS

nbt.nhs.uk/sites/default/fi...

[Patk1]

I don't have emphysema but i find the sooner u treat a flare up,the quicker it settles

[flicky1]

I was diagnosed with mild to moderate Emphysema about five years ago. Ventolin doesn't do much for me - when tested at the hospital it made only 5% difference. I had had several nasty infections within a year, and was given a rescue pack because of this. The first winter after diagnosis I got increased symptoms, I took both the antiotics and the prednisolon but they didn't seem to do much. At the same time the following winter my symptoms worsened, and a specialist nurse told me only to take the prednisolon. This didn't seem to help much either. I decided the following year not to take either and I wasn't any worse.

I think that the probable reason for the original infections was due to working in crowded classrooms. - I stopped work because of this and since then the nasty infections have not reappeared. I think that weather conditions and pollution are triggers for the flare ups I still get, I just accept that I don't feel well due to certain conditions, and hope that I won't become really ill. I'd rather do without the rescue pack if I can, as both the antibiotics and the steroids are not great for your body.

My maintenance inhaler is Anora Ellipta which may also be maintaining my relatively stable condition.

[anng18]

Hi XS,

Feel very similar to you, but my nurse told me to take both steroids and anti-biotics when I have a flare up - very similar to your own description. I've been puzzled by this, as there is not necessarily any green phlegm etc., but I think it is considered preventative to an infection getting a potential hold on my lungs.

Very difficult, as I don't want to damage other parts of my body by taking medication that I maybe don't need.

[XS1100 in reply to anng18]

Like you I don't always have any phlegm but I guess the NHS advice etc isn't a "one size fits all". I spoke to my respiratory nurse a couple of days ago and actually had a really long chat about taking the steroids which, along with all the replies I've had on here, has helped to clear up a few things for me. Hope you're well.

[stamford1234]

Don't hesitate. If in doubt, take them. Frankly, the more flare ups the shorter your life. I hope you are feeling better soon, all the best.

[Lol1944 in reply to stamford1234]

That is my understanding exactly

[Muzzy5]

It does make sense - I too am never sure - best thing is to call your respiratory support and ask never delay doing this

[stamford1234]

I have found that if you are having an exacerbation or flare up you are already at a low ebb. It creeps up on you and can bring you down physically and mentally. Just take the meds

[stamford1234]

In my experience for what it is worth. Exacerbations creep up on you, You keep thinking I'll be okay tomorrow then before you know it you are sitting on the edge of the bed at 3 am in the morning gasping for breath. Just take them because that's what they are for x

[XS1100]

Thanks for your reply. 3am, been there, done that, survived (well almost lol) Excuse my attempt at humour.