How quickly did your symptoms progress?

[sinclair61]

Hi,

I am sure this has been discussed before but I can't seem to find it on the site.

I am not necessarily concerned about how quickly I will progress from here but I was wondering how quickly did people go from no symptoms, or relatively few, to constantly need inhalers?

I have gone from bringing up phlegm every now and again and being slightly SOB on serious exertion to constantly need inhalers every 4 hours for chest tightness because of 1 flare. I am taking Sprivia and seretide. Is it normal to still have such chest tightness so regularly?

My issue isn't stamina, I can still do plenty, but rather I have far bigger issue of exhaling at rest. Is the constant ache and tightness across my sternum something everyone gets?

Still trying to make sense of this all but primarily I am concerned I haven't got this flare fully under control or that I still have a lingering infection.

Thanks

[Badbessie]

Have you tried mastering purse lip breathing its made a huge difference to me whilst exercising. It really helps when my chest feels tight. Also have you tried diaphragm breathing this can also help. Did you GP send sputum away you may need a different antibiotic if your chest infection is not clearing. Lastly Inhalers do help but are not the complete answer I am stage 2 57% so they tell me and the only inhaler I use is fostair 100/6 1 puff twice a day. I exercise quite aggressively and at the present time do not use anything else.

[sinclair61 in reply to Badbessie]

Hi

I try PLB quite regularly and doesn't seem to help. Diaphragm breathing does though.

My issue is not exercising. I don't really get SOB, I can push myself and recover quite quickly. My issue is that I have a constant chest tightness at rest. The other confusing thing is that my chest X-ray didn't show hyperinflation.

I don't really have any signs of an infection but I'm struggling with the idea that I've gone from being pretty much fine to constantly needing my blue inhaler to relieve chest tightness. It's not SOB, it's just a really uncomfortable feeling across my chest.

I don't know, maybe this is all to be expected. Just very frustrating. Especially since I am left thinking that maybe they caused unnecessary damage by not giving me oral steroids until 3 weeks in to the flare.

[Badbessie in reply to sinclair61]

Since I started exercising I have gradually lost that tightness across the centre of my chest. It worked for me. We are all so different it could be a combination of things, Perhaps a review by your respiratory team is now in order.

[sinclair61 in reply to Badbessie]

You are probably right.

Out of interest, what exercise do you do?

[Badbessie in reply to sinclair61]

I walk between 3 and 5 kms every day. On the days I do 3 kms I include a 6 minute walk test. I can now do over 800m on that test. I also do step tests up a 12 inch step I do four six minute sessions of those in between those I do upper body exercises. There are lots to see on YouTube.I am 58 and I had bilateral pneumonia and septicemia over Christmas and its taken ages to get anywhere near as fit as I was.

[rubyred777 in reply to Badbessie]

Hows your oxygen level, while doing all this exercise? Sounds like exercise, is doing you well! Ruby ☺️

[Badbessie in reply to rubyred777]

When I came out of hospital they were 94/95%, over the the three months my resting o2 is now 98/99%. When I am exercising and really pushing myself they go down to 95% but If I take my time and go at a slower pace they remain at the 98/99% level. I use Purse lip breathing all the time now. I can walk without it but it allows me to exercise longer without any drop in sats.

[Badbessie in reply to sinclair61]

Did you take steroids when the problem started?

[sinclair61 in reply to Badbessie]

Hi

Not sure if that was directed at me but no, I went 3 weeks without steroids. I had been abroad in bitterly cold weather and had spent all day in -10 weather. I came back to England the next day and started getting terribly SOB and went to my GP. They checked me out, sent me for an X-ray and gave me an inhaler. I didn't improve so went back to GP and was given a steroid inhaler and anti biotics as well. Only after having symptoms for 3 weeks did they give me oral steroids. Took steroids for 5 days and felt wonderful for 10 days and then symptoms returned. Was given Sprivia and seretide then but hasn't really improved since and have had constant chest tightness since.

[Badbessie in reply to sinclair61]

yes it was directed at you, After my pneumonia I left hospital, three weeks later another chest infection had antibiotics and steroids, felt great for a while then had the chest tightness but no obvious infection given steroids again as gp believed there was some sort of inflammation in my chest. This seemed to do the trick as chest symptoms went.Six weeks later I am really hammering the exercise with no problems perhaps going back to your GP and asking for an opinion on a further dose of steriods may help.

[sinclair61 in reply to Badbessie]

Thanks, will def go to my GP on Monday.

How long was your 2nd course of steroids?

[Badbessie in reply to sinclair61]

5 days at 30mg .

[mrsmummy]

I found Seretide did not suit me. I always had more problems with my breathing when taking it and I know that, whilst it suits some, others have also had problems. Try a chat with your lung team to review your medication. As to progression of symptoms, if you got 50 replies there would be 40 different answers.

[sinclair61 in reply to mrsmummy]

Of course!

But just wanted to know if anyone else was like me - going from largely being fine to being so dependent on inhalers in such a short space of time. It always good to know you are not alone.

Just can't get my head round how my exercise capacity has improved considerably since the flare and yet I am now struggling so much at rest.

[mrsmummy in reply to sinclair61]

That is why I suggested you discuss your inhalers with your prescriber.

[sinclair61 in reply to mrsmummy]

Will do!

Thanks

[mama-mia in reply to sinclair61]

Spiriva didn 't help me either. I experienced the same symtons as you are having. It felt as though I was only breathing from neck up. Change it for something else asap

[peege]

Yes, speak to your respiratory team. At this stage your inhalers should be controlling your symptoms well enough not to need Ventolin.

We're all different. I thought I was fine with Seretide. However, since changing to Fostair it's been fantastic for me. Hardly need Ventolin now. I've asthma & bronch though, not copd.

[Badbessie in reply to peege]

I have found Fostair very good, I have only used my ventolin once during a chest infection. Never been on any other medication so cannot compare.

[Mardi in reply to Badbessie]

Wow that's good.

[soulsaver]

You may have mucous plugs still, blocking some airways. Have you been shown a huffing it up technique?

You could be having a reaction to the inhalers. Spiriva can cause digestion problems at the that will give a bloated feeling pressing on your lungs? And seretide has it's own list of sides, caused loads more problems for me. You could ask your GP/Nurse to try changing them.

Possibly risky, but if it were me I'd see if I can do without the Spiriva & Seretide and rely on Ventolin as required for a couple of days, see if things improve.

[mrblue12]

If you have a problem with mucus in your lungs I would recommend a flutter device. They help clear the lungs of mucus making it easier to breathe.

[sinclair61]

I don't think I have mucus plugs. Would one know? I bring up very little phlegm these days and usually when I do I can clear it quite easily.

[Mardi]

Same here. Got infection last August . It's still there . Haemophilus Influenzae. Take seretide, ventolin and spiriva too . Antibiotics for 7 or 10 days then it's back in 2 weeks. Even though I am 73 I can walk 2 or 3kms comfortably and sometimes do a burst of running for 50 metres. Couldn't do that at 40 as I didn't have seretide and they said only 2 puffs of ventolin every 4 hours. My bronchiectasis is mild but a big pest.

I'm having around 8 to 10 puffs of ventolin in the morning and going to bed . And more sometimes. Ive only had bronchiectasis since pneumonia 5 years ago. Going to a private respiratory specialist on Tuesday . See what he says about preventive antibiotics. Mardi.