Repeated flare ups
Hi I wondered if anyone has any advice. I’m asthmatic and aged 45. I used to smoke (I know - seriously stupid and dangerous). Since November I have had monthly, week-long flare ups. Very breathless and often go days without sleeping or even eating. I’ve been to A&E six times. The doctors are getting sick of me and after giving me salbutamol nebuliser they discharge me, still breathless because my oxygen sats are normal. It’s not like asthma I used to encounter. It’s like a fullness (almost like drowning) in my right side. I get an aching and soreness throughout my right lung and back. Quite often (like at the time I’m typing) there are loud popping and rattling wheezes, most prominently when laying on my back. There is fluid in there because I often feel a clump of it move, but if I try to cough it up it does nothing. Annoyingly whenever by the time I see a doctor they say they can hear no wheeze. And as the sats are normal they start to suggest it’s anxiety. It definitely isn’t - I know my own body, because after about six days it usually relaxes in my chest and I spend a day coughing up thick phlegm. Then I have two weeks well and fit and it happens all over again. I’ve had four chest x-rays this year. Many blood tests and everything comes back normal. But I’m so breathless. I’ve lost two jobs through constant sickness periods. I’m on duoresp, ventolin, carbocistiene and montelukast and get a course of prednisone every flare up. I don’t even think the steroids do anything as it takes six days to subside each time. I’m starting to wonder if it’s COPD. It’s so frustrating medics just discharge me cos oxygen sats are fine. It’s seriously like they think I’m a mental case. It doesn’t respond to inhalers or nebulisers and I can’t cough anything up until the day the restriction suddenly eases then I cough up loads of phlegm. It’s ruining my life. I have a respiratory consultant appointment in August but I’m just scared they’ll say they can’t find anything wrong again. I know I can’t come to a forum expecting medical answers, but just wondered if anyone had any similar experiences. I’ve tried to eliminate every trigger I can think of. I’m even starting to think daft things like is it the Covid jabs I had a year or so ago. Any help appreciated. x
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I am surprised you have not had a CT scan. I think this would show more than an x-ray. I would also look for an appointment with a Pulmonologist and not necessarily a consultant. I do cough up mucus a couple times a week. But it has been happening less and less as my pneumonia clears up. I do have COPD, but it doesn't flare up as long as stay away from lung irritants such as dust, animal dander, air pollution, ozone action days, etc. I have also noticed that after clearing my lungs of mucus, I definitely breathe more freely. But that is to be expected. I would also look into having a mucus sample tested for infection. But that would involve a doctor. That is how my doctor diagnosed my pneumonia. Do you not have a primary physician? These are the only suggestions I can come up with. Obviously, you just need a doctor (preferably a pulmonologist) to will take the time to diagnose your problem. Good luck and God Bless!
How frustrating! I'm sorry you have to go through this. However, you're certainly not crazy or a "mental case". As you say, you know your body and you know what's "normal" and what isn't.
I'm not entirely sure what you mean by "respiratory consultant", but I would recommend that you see a pulmonologist. They will get to the bottom of this one way or another. It may take some trips to the doctor and a barrage of testing, but better to know what's going on and be treated for whatever it is.
I recommend that between now and the time you go to see the doctor, you keep a detailed log/diary of how you feel, what symptoms you're experiencing, how long they last, and if you know what triggered them. We often forget the exact chain of events when asked, so this helps tremendously.
Sending healing thoughts your way.
Lyn (site moderator COPD.net)also asthmatic, diagnosed with COPD 3 years ago. I also don’t get much relief with inhalers but do use them it’s the breathlessness that bothers me like I’m running out of air. Soooo, I have found something that helps me a lot with that. It’s a supplement called White Lung. I get it on Amazon. There were lots of reviews from people with COPD so I thought I would give it a try. It’s like it relaxes your lungs so you can breath normal. You could read the reviews and see if you think it might also help you. The other thing I have found that helps me is a device called The Breather. Invented by a respiratory therapist to help with Copd. It trains you to breath with your diaphragm properly and makes breathing much easier. You will definitely cough up a lot of mucous, some t not till a day later but it gets that deep stuff out. The other benefit I have found with the Breather is I sleep so much better! Also really helps with wheezing. I’m not trying to get anyone to change what they are doing or ignore your doctors advice but these two things have really helped me. 
Hi Casey, and thanks so much for lending your own support and encouragement here. We also appreciate you sharing your own personal experiences managing this disease.I'm glad to hear these two adjuncts ('white lung' and the 'breather'😉, work so well for you.
We appreciate both your input and your feedback.
Enjoy the weekend!
Leon (site moderator COPD.net)
I HAVE BEEN DEALING WITH ASTHMA AND, CHRONIC BRONCHITUS ALL MY LIFE AND COPD WAS ADDED LIKE 10 YRS AGO. COUGHING UP PHLEM IS NORMAL FOR ME. ABOUT 2 YRS AGO I TOO WAS HAVING FLARE UPS MONTHLY ALWAYS RESULTING IN INFECTION IN MY LUNGS.ANTIBIOTICS AND PREDNISONE WAS A GIVEN EACH TIME.THIS WENT ON LIKE 5 MO. STRAIGHT.MY PLUMANARY DR. WAS NEVER AVAILABLE AND SEEING ME 1X EVERY 3MO.!! MY PRIMARY WAS THERE THOUGH.I BECAME DEPENDANT ON THE PREDNISONE AND IT SOON WAS A DAILY 10MG DOSE.MY LUNG DR.STARTED ME ON TRELEGY SAMPLES AND MY OXYGEN LEVEL WENT FROM A STEADY 86% TO ABOVE 90%.I HAD MORE ENERGY,WAS ABLE TO DO SO MUCH MORE AND FLARE UPS BECAME A THING OF THE PAST.ID'D ALSO BEEN DOING BREATHING TRTMNTS AND USING PRO AIR AS NEEDED.EVEN THIS WAS LESS IN TIME.I'D KEEP RECORDS OF MY OXYGEN LEVELS THROUGH OUT THE DAY.ABOUT 4-6MO.LATER SAMPLES WEREN'T AVAILABLE ANYMORE AND MY INS.WOULDN'T COVER IT!!! I PANICED, GOT BUSY ONLINE AND FOUND NO HELP!!! OXYGEN WENT BACK TO 85-87%.WAS PUT ON OXYGEN AT NIGHT WHILE SLEEPING WHEN LEVELS WERE AS LOW AS 79% AFTER A NIGHT'S REST!!!!!HE Had me try Symbicort. wow not good!! bad thrush!!!long story short I got another lung dr. and different ins. got back on trelegy after it was ordered medically necessary, and things were good again. about1-1/2yrs later and I started getting lung infections back-to-back.!!!lots of bronchitis lots of greenish/yellow phlegm throughout my body. I'd show signs of recovering the 2nd-3rd day into taking antibiotics and go right back to the yellowish/green phlegm. this went on from April 11th-june 16th or so.2mo. straight antibiotics!!!! after a mo. I suggested my sputum being sent to the lab.Came back I had pseudomonas aeruginosa!!!! from constant infections in my lungs. I feared it was going to become antibiotic resistant.!!!finally cleared up @ 3rd wk. of June. July 5th I'm sick again!!! Is this how I die??complications of constant lung infections? Sorry so long but needed.Note:lung dr. treating it lightly-as acute exacerbation of chronic bronchitis and wheezing. HELP
, wow it definitely sounds like you have been through a lot! I hear how scary and overwhelming these constant infections can be. I know a few of our community members have had similar experiences so if you would be interested, you can start a forum here: COPD.net/forums sharing your experience where more of our community can see and respond to it. Wishing you a peaceful day. All the best, Sam S. (COPD.net, team member). hi, my primary dr put me on Trelegy a month ago and I went from 84%to 97% o2 levels and I can actually do things again, I was diagnosed with COPD about 10 yrs ago. I had asthma as a kid and then started smoking at 13 because “everyone did it . Bronchitis at least once a year then I developed a heart condition, every time I went to hospital for shortness of breath and chest pain thinking it is my heart again turned out to be the COPD. After November this past year my breathing got so bad I couldn’t do anything, finally my new Dr put me on Trelegy and things are getting better for me no more O2 24-7 freedom again. I hope this helps you, you are not crazy that is what they tell us all .
