I'm sort of an odd egg in more ways than one. But I always took good care of myself physically, diet, exercise, never smoke and drank only socially. Then I got a weird type of autoimmune COPD two years ago. It confused doctors, some saying I had COPD, others not. All I knew was I couldn't breath.

Then about 8 months ago it all suddenly went away as sometimes happens with autoimmune diseases and my breathing normal. It felt great. Then about 1 month ago i got a real small bout of bronchitis, so small it was barely noticable, but the COPD returned with a vengeance. I even passed out at the gym and they called an ambulance.

I have read lung infections with those with COPD can sometimes ratchet up more permanent loss in lung function. I can barely breath now even walking to the car. Is this what happened? Do you think my lung function will return or improve?

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  • This must be confusing and frightening for you. Have you seen your GP? I'm only guessing but there are other things which might cause your symptoms. Think you need some lung function tests, maybe referral to a specialist, and most of all to ask the questions which are troubling you. Uncertainty is one of the most difficult things to deal with. Good luck.

  • I hope that you find a doctor who can sort this out for you. It's really scary to not be able to breathe. Good luck. I hope things get better soon.

  • Hi Michael, I don't know about the effects of exacerbations on autoimmune copd and I can only answer your question in a general kind of way, and also with my own experience with a standard though pretty extreme recent copd exacerbation where my function was hugely lowered.

    So yes, it can happen that your lung function can deteriorate permanently after an exacerbation but very often it doesn't. I have severe copd and am an occasional Oxygen user. What has helped me after double pneumonia last year when i was for the first time on oxygen 24/7 is pulmonary rehabilitation. If I were you I would speak to your GP about whether it would be appropriate now to have a referral for this. Its a course of exercises and education tailored for people with copd held in most, but not all, areas in the country (U.K.) You could also ask about a medication review as your breathlessness needs to be better controlled. Then you would be in a position to start exercising, beginning from where you are at the moment.

    Muscle wasting is a feature of copd and this needs to be countered by exercise. By doing the PR course, then continuing the workouts about 3-4 times a week I have rebuilt my muscles and got back from using O2 24/7 to hardly needing it except for very hilly terrain which was what I needed before getting ill - It took me about 6 months. I've spoken about myself as its an e.g. of what is possible, but wouldn't necessarily apply to everyone. So I would suggest your seeing your GP or respiratory nurse asap to discuss your needs and what can be done to get you back to your previous functioning. WatfordGirl is right that seeing a specialist would be good and that uncertainty is one of the difficult things about copd.

    Good luck

  • Brilliant reply.

  • Thank you kindly :)

  • O2Trees I found your post about PR Classes very interesting as I am getting assessed this week to hopefully join one in my area. I'm on about 15 hrs O2/day and struggle to move off my backside for panicong about getting SOB. I'm hoping like mad that I can embrace these PR classes as life just needs to get better for me.

  • Hi SquirrelsHolt, I firmly believe almost everyone can improve their functionality through exercise. The PR physios should be able to start you from where you are presently at, and they will be there to encourage you and to provide reassurance about your sob.

    Remember that sob in itself is not something to be afraid of. Getting breathless at some point each day is very helpful as it helps push your lungs a bit, so that you get into an upward spiral, not a downward one which many are in who take no or little exercise. In fact "Get breathless" was the BLF's slogan one year a while back.

    Make sure you let the assessing physios know how motivated you are to improve your life.

    Very best of luck :)

  • Many thanks.

  • At the risk of sounding stupid, I am curious as to why someone would need oxygen 12, 14,16, or 18 hours a day vs only when sleeping or 24 hours per day. Why a set number of hours?



  • Hi there LadyoRockee and thanks for your post. I presume that they ( the respiratory docs and nurses ) work out how much oxygen you need help with and I'm told I need up to 15 hrs per day, and then obviously more if I was moving about etc. Once I start my PR classed, I will be asking questions like this. I mean how do they know I only need 2 litres and another person may be on 4 litres etc. I will let you know !!

  • Hi SquirrelsHolt, thank you for answering me. I started PR, but after 2 sessions was dx'ed with pneumonia so my Pulmonologist told me not to go for awhile. I have been cleared to continue, so I will start back next week.

    As for the oxygen, it just makes no sense to me! I understand using while sleeping or when you are walking or performing any activity or using it 24/7. If I was told to use it 15 hours a day, my first question would be, "Which 15 hours?" I have an oximeter and can usully tell when my sats are low so I check with the oximeter and am rarely wrong! I ended up on oxygen after I had the 4th bronchoscopy. I got home from having the procedure and 6 hours later, my daughter took me to the hospital, I could not get enough air...my sats were at 60...I spent 4 days inpatient and was discharged home with oxygen set at 1 lpm 24/7. Then my Dr called and had me do a sleep session wearing an oximeter that records. After that he said to sleep with it at 2 lpm. I was no longer using it while awake.

    I know if I was told 15 hours now. I would panic, as I now need it 24/7. I am praying and hoping that PR will help me get off of it! Life would be so much better if I didn't have to lug around the backpack!!

    Again, thanks and please let me know if you learn why a limited amount of time is ordered.


  • Yes, I'd never really thought about it. I have the O2 on for whilst I'm awake and then I presume the docs are thinking I'm asleep without it for 8 hrs ? I wish u well on your PR classes - wouldn't it be great to be able not to carry around the blooming oxygen if you leave the house. I'm being assessed for my PR tomorrow. Fingers crossed !

  • I was dx with COPD in 2006. And I used to only get an exacerbation in October and and Feb then developed OA in 2012 and my breathing got worse and none of my medication would clear it up. My OA was getting more painful and in other joints I was referred to rheumytolagist and was dx with PsA and psoriasis both autoimmune diseases is autoimmune COPD a medical condition because I have never here'd. Of it before and it would explain a lot

  • To prevent exacerbations:


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