Copd exacerbations

Hi folks I'm new to this forum and this is my first post. I was diag with copd in 2008, since then I have managed to hold down full time job, give up smoking and regularly walk and exercise. Since Aug last year have had at least 5 flare ups, spoke to blf nurse and own gp and am waiting on referral to specialist. When I'm off the steroids more than a week it flares up again I'm really worried that it's progressed so quickly, struggling with work and daily tasks, can it progress so fast ? Any advice would be appreciated I'm at my wit's end thanks vera b.

52 Replies

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  • Morning Verab. Welcome to the forum. It is very helpful and supportive. I do not have your condition but many, many folk here do and will give you loads of advice. 

    All the best and let us know how things go.

    K xx

  • Thank you for the welcome katinka, its much appreciated.

    Vera 

  • Hi  Verab and welcome to the group. I was diagnosed with COPD in 2006. And in 2011. I had a ct scan done and it showed a small amount of bronchiectasis. The same thing happend to me after stoping steroids it would come back. It is good that you have been referred to a specialist. And now none of my medication is helping me. I am breathless all the time. And I have been told I have low immune system. So I am waiting to see a immunologist. I hope the specialist sorts you out soon let us know how you get on. Take care x

  • Hi nottoobad, thank you for the nice welcome, I'm sorry to hear your having trouble too and hope you get on well with the immunologist, will keep you posted.

    Thanks

    Vera 

  • Hi Vera,welcome,having been diagnosed for ten years I had a bout of pneumonia.I went from more or less normal to very breathless within months.That was 3 years ago,I have severe emphysema with a Fev1 of 20%.I have improved slightly and await Lung Volume Reduction Surgery.We are all different,it is a very individual condition.Your consultant should help you understand,you seem to be doing all the right things so keep it up.All the best,try not to worry,it does,nt help.D.

  • Hi verab am really sorry to hear about your exacerbations and especially how you have done all you can to keep this nasty disease at bay . I am afraid I have no answer for you but am very glad you are going to a specialist . Good luck with that visit and let us know how you get on - take good care 

  • Thank you for your good wishes m3ar this looks like a very good forum for support, just helps talking to others with same condition thank you for replying.

    Vera x

  • Hello Vera and welcome to the site. I understand your concern, I was diagnosed in 2009 and last year was the first time I had a flare up since taking my inhalers. By coincidence mine was in August and it was bad, the Gp said it was some bug going round that started it off, it does not seem to have cleared up fully and I have had other incidences during this year, so my advice to you is go and see the specialist as it is spoiling your ability to enjoy life. Every best wish for a good outcome xx 

  • Hi Katie thanks for the nice welcome and for sharing your own experience, lots of my friends who don't have this illness are getting lots of coughs and colds that just don't seem to clear up, possibly something to do with it, thanks for your support.

    Vera x

  • Hi Vera welcome you have found the right place for help and support. I too have COPD   but I was diagnosed many years ago, unfortunately it can flare up quickly but once you find the right medication it can help to control it .I was the same as you once I finished my antibiotics and steroids it would come back then I saw a wonderful consultant who put me on a long term antibiotic called Azithromycin which in my case it has helped. I hope the consultant sorts you out let us know how you get on. If you need to ask anything else don't hesitate.

    Love Sue

  • I to was diagnosed with copd some 16 years ago, I to get flare ups some have landed me in hospital. I have been on oxygen for the past 6 years which has helped a lot with the breathless.  I have not heard of Azithromycin what is it ?

  • Hi Christine Azithromycin is a long term antibiotic I take just one pill every other day. I was getting lots chest infections one after the other and producing lots of horrible sputum but since taking this my chest has been clear of infections. I do write on here maybe you have seen my posts I am having to deal with other things at the moment a shadow was found on my lung and I have had a coarse of radium I saw my consultant last week who was pleased how things were progressing I finished my radium I have had more blood tests a further scan and X-ray I go back for results in May at the moment  I feel really good so I'm staying positive and hoping for good results.

    Hope you are keeping well

    Sue x

  • tHANKS FOR THE INFO WILL ENQUIRE NEXT TIME i AM AT MY CLINIC NOT HEARD OF THAT ANTIBIOTIC BEFORE.

    Hope everythink goes well with scan and x-ray . How long have you been having Lung problems It is more than a pain.

  • Hi Christine l have had COPD for years as you know it is a progressive illness but you learn to cope with it along the way I found doing a rehab coarse helped me a lot. The worst thing for me is where I used to do everything at ninety miles an hour you have to accept that you have to slow down and plan your time, I lead a fairly active life thanks to good friends. Once you get your family and friends to understand your situation that helps also. Take care let me know how you get on after your visit xx

  • Hi sue thanks for sharing your own experience, I'm glad you got some stability after your own flare ups, and your right this forum I'm sure will go a long way to helping me deal with the ups and downs of this condition.

    Thanks vera x

  • Hi sue thanks for the welcome and your own experience gives me hope that it can be brought under control with the right treatments.

    Thanks for sharing

    Vera x 

  • Hi Verab. I just wanted to welcome you along with others. I cannot offer any ideas on your situation, but I am hoping you learn what is happening and can fix it .

  • Hi punkyb thanks for the welcome much appreciated. Vera 

  • acupunchre a good idea I had it 

  • Hi guytane, will bear that in mind, always up for trying alternatives thanks vera x

  • Hi Verab I am exactly the same. I had my first exacerbation over easter and was in hospital.  I finished the steroids and antibiotics and I am just the same again. I am just worried that this is how I'm going to be now  😕 I really hope not. I am also waiting to see the specialist.  I really hope things get better for you.

  • Hi Amy, yes I completely understand how you feel and it gets you down, but I'm hopeful that we can both get back on track and will be rooting for you.

    All the best Amy keep in touch vera x

  • Verab welcome to the site I think most of the wonderful people on here have offered excellent advice good luck with your appointment best wishes x

  • Thank you tichy 52 much appreciated.

    Vera x

  • hi vera same happened to me i was on 18 antibiotics one after the other before i seen a specialist i hav since been had ct scans and lung biopsy i was diagnosed with empheysema and desquamative intertestial pneonititis which is and auto immune disease in which my body attacks my lungs hopefully this is not whats up with u but even though im not in good health im dyill getin on with life

  • Thanks for your reply Karen, glad your  getting on with things despite your problems.

    Take care

    Vera x

  • Hi Verab welcome to the site. I do hope your specialist can find something to help you. Please do keep us posted how you get on very best wishes x

  • Thanks barb for your kind regards, I will keep you posted.

    Vera x

  • Havae you had a flu injection or one for pneumonia?

  • Hi tamariki, yes I get a yearly flu jab since diagnosis.

    Kind regards

    Vera 

  • Good Morning Verba & welcome to the community. Congratulations you have done so well to manage your COPD, continue working & stop smoking. It must be a terrible shock to have such a bad & prolonged exacerbation. Waiting for consultants appointments is frustrating & nerve racking, but try to hang in there & not think the worst. Also keep talking to your GP & respiratory nurse for short term support. I have COPD bit it's complicated by other conditions & were all so different so I can't offer advise. Keep posting & let us know how you get on. Best wishes Nan

  • Thank you for your encouragement and sound advice nan it is much appreciated. Vera x

  • Hi Vera b

    Sorry to hear of your predicament. Do you live in Scotland ? I am setting up a patient. Information forum  for those with serious lung problems and want to help.  So get in touch if you can Wherever you are I hope you soon get help.Have you seen a specialist if not try and get one soon.If you have go back for another emergency appointment via GP and see if you can get some resolution. Try giving up anything base with salycilate- aspirin derivative including berry fruits ,citrus fruits and wine. Google this and see what you can find.

    Good luck. This is indeed a fabulous community.

  • Hi fcag. Thank you for your reply and yes I do live in Scotland and would be interested to hear how you get on with the patient info forum. Thanks  for your advice.

    Vera x

     

  • FCAG HELLO.....was curious as my FEV26% an ex smoker...15 months and a heavey wine drinker.Does alcohol impact brerathing?

    Cheers...,Pipiping

  • Welcome Vera, you seem to be doing all the right things, so well done for that. Maybe when you see pulmonogist you will get more help. I have to take daily ABs and steroids to help keep these horrid infections down. But they always go eventually! Enjoy the good days! Xx

  • Thanks Sheila for your encouragement. much appreciated. Vera x

  • You seem to be getting loads of really good advice. The problem with COPD is that it varies so much from person to person. As for me one minute i was running up flights of stairs, the next thing i knew i couldn't walk to my kitchen. I kept going to my gp with chest infections, finally got diagnosed with COPD . I had a bad winter with one infection after another but feel fine at the moment. It just flares up out of nowhere. I hope you get some answers, at least then you know what to do. Good luck. 

  • Thanks for that Sheilauch. Appreciated and I hope. Your avoiding flare ups.

    Vera x

  • Welcome to the group Vera - so much good advice above - the only thing I would add is to ask the consultant for a CT scan when you see him/her to get a better idea of the condition of your lungs.  Best of luck x

  • Thanks dedalus,will do.

    Kind regards verab

  • Nice to meet you, vera.  There have been some particularly stubborn bugs around recently, as a lot of members have discovered, so it is great that you have an appointment with a consultant.  Hopefully you will get it sorted once some tests have been done.

    Tee x

  • Thanks tee your right about persistent bugs, hopefully get it stabilised soon nice to meet you too. Verab x

  • Hello from Canada to all on this forum. I also am new and just stumbled onto this site. After several tests to determine the cause of my blood disorder to where my blood work showed a high level of red blood cells (Polycytemia) the Doctors were looking for the cause of this. After a multitude of tests the cat scan showed I had COPD. This was just diagnosed 6 weeks ago. Now my condition is called a "secondary Polycythemia". I was reffered to a respirologist after having a plumanary lung function test. My levels were 59. He put me on a inhaler called "ultibro" which is a 24 hr inhaled medication that I take one a day in the morning. It has really helped. Also the rescue inhaler salbutamol to take only if needed. I see him again in a few weeks. I also work but do find if  I am walking to far it does not take long for me to get winded, I am very happy I found this forum to share symptoms. Thankyou to all on this forum. Nice to communicate with people with the same condition.

    Ellen

  • Hi Vera, I was diagnosed with Emphysema (COPD) in 1965, when I was pregnant with my 5th child (I had a 6th 3 years later).  I didn't smoke but lived in a houseful of smokers when a child + had whooping cough aged 6 & pneumonia aged 7 which is apparently what affected my lungs.  Over the years I've had 8 attacks of pneumonia, several cases of bronchitis and pleurisy + 4 lung collapses (2 each side), after the 3rd I was told I had to have a pleurectomy operation on the 'good' lung (left) thank goodness I did as the right lung collapsed again the following year.  I was under the local chest clinic for over 20 years during which time it was found that the base of my right lung had permanently collapsed.  According to the weather I regularly have to take antibiotics and steroids + anti-hystamins (am allergic to loads of things, which was put down to asthma before the COPD diagnosis).  Currently I am on AirfluSol twice daily + Ventolin whenever needed - i.e. before I attend a weekly Zumba class or when I know I will be climbing any hills.  I try to walk as much as possible, it helps having a dog to take out daily - I will be 75 in July.  Hope this helps.  patedwed.

  • Hi pat,you are indeed a truly inspirational person, and your courage and determination to live as full a life despite the illness is applaudable, your post has given me a real boost not to mention some hope for the future, good on you pat.

    Regards vera x

  • Welcome to Verab and also Grandkids three. You've come to the best place here and no doubt you will get a big hello from everyone. Don't be afraid to ask away or just to have a moan or winge either. Hope you both have good weekends.

  • Thanks for the warm welcome. Squirrel its a great forum,and imm sure I will b checking. It out on a regular basis.

    Regards vera x

  • Wow patedwed, I'm gobsmacked !!! Your a marvel to have had emphysema all those years, despite all you've been through. The longest I've heard of anyone having it is so far is 30. 

    All newbies should be able to read your post. It's an inspiration. xxx

  • Thanks casper99, a lot of people don't know how I've lived with COPD for so long (neither do I come to that), just the luck of the draw I suppose :)

  • We are all different Verab but I had lots of problems before being diagnosed in 2009.  After I was given a sere tide inhaler very few problems unless I travel on a long haul flight and I put that down to recirculated air (no evidence, just my thoughts) so take antibiotics with me.  I also get excacebations if there is high humity here or abroad.  Luckily antibiotics antibiotics resolve it so far but I have needed a second course once plus steroids.   I was very upset when first diagnosed but as time as passed I accept that I cannot do everything I did in the past and concentrate on the things I can do and life is OK.  I like payeded take ventolin before going on a longer walk and find that other people are very kind and are willing to wait for me if/when I slow down.

  • Hi Verab,It does seem once it gets its hooks into you, you constantly are on a loop and have trouble breaking free of exacerbations/infections ,I had 4 lots of rescue meds in a short period of time ended up in hospital with Pneumonia last april. It seems you have to keep taking them until signs show you starting to recover especially november to february can be hard to shake off due to the weather.I have now started using an Acapella device, also 3 times a week taking AzithromycinI i have been clear since january hope this helps you

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