Hello. I am writing this because I suspect that what happened to me might well be happening to others. Please read...
Roughly 18 months ago I ended up in hospital with a severe exacerbation - the first in my life at age 57. I had always been an extremely strong and fit dancer, despite smoking off and on, but had quit that habit some time before. When the consultant at Hereford Hospital heard I'd been a smoker he quickly declared "copd" after spending what seemed like 30 seconds with me. Voila. I had copd! Or did I? From the start I was unconvinced. Read on!
Every copd inhaler they had me try made me sicker and the only thing that really relieved symptoms was prednisone. I was in and out of hospital 5 times last year. Finally my diagnosis was adjusted to asthma/copd (ACOS) and I was discharged with ventolin and high dose Fostair inhalers. I'd been living in a damp cottage and moved to a new house and area but continued to deteriorate, managing to stay away from A & E only by taking prednisone for 3 - 5 days every few weeks. This would help for a fortnight or so and then I'd quickly decline again, the dreaded sputum returning that demanded I spend exhausting sessions trying to clear it, most days bringing up about a bowl of the stuff. By now I'd had to stop teaching dance months before, could barely walk, take a shower, dress, or get out of bed without taking several doses of ventolin... Add to this some horrible steroid side effects and you get the picture. I would go to the GP in desperation most weeks, oxygen levels usually down to 90, peak flow at 100 or so. I felt that life as I knew it was over. I was an invalid with a bleak, and probably short, future ahead.
Then one day about 6 or 7 weeks ago I read something on here about eosinophilic asthma. I'd never heard of it, googled to find out more and then looked at my blood test results from the past months. All my eosinophil counts were high, except once when I'd been tested while on steroids. I googled some more... Were my initial doubts about the copd diagnosis correct after all?
By now the GP was so concerned at my terrible state that I was referred to see a consultant at a different hospital in my new area and an appointment came up quickly. I went along armed with my blood tests and research, all ready to do battle with the consultant, but he took one look at my blood tests and said "I see - you have eosinophilic asthma." OMG!!!! He concluded that I did / do not have active copd, prescribed a medication I'd never heard of called Montelukast, and said he'd see me again in 6 weeks.
I started on the Montelukast that evening, just over 3 weeks ago and well over a month since my last prednisone course. The effect was immediate and magical. Suddenly I could breathe again! Daily sputum production went down to a teaspoon. I can walk briskly up pretty steep hills and today did an hour's ballet class without getting out of breath. I've also gradually reduced my Fostair 200/6 from 4 puffs to only 2 puffs a day and haven't touched the ventolin inhaler since I started on the Montelukast.
It's a total transformation. People around me are also amazed - and shocked that I went through such suffering for 18 months only to find that a simple rereading of my case and change in meds could do this. I am of course thrilled but also angry that in all this time no one had, it seems, bothered to look at my blood tests properly or considered a different diagnosis or options. I'm very concerned that this not happen to others. If you also wonder about your diagnosis, please read up on eosinophilic asthma and how it is frequently mistaken for copd, get print outs of your blood tests, and get a second opinion.
In the meantime, thank you to the person who posted about eosinophilic asthma on here!! I'll try to refind that post and thank them directly.
Written by
dgreen88
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Just curious what your dosage is?my lung doctor prescribed it for me but said it was for allergies. Beginning to lose faith in doctors. A friend of my son's did a test on me with a machine he has for essential oils and he told my son he doesn't think I have COPD.
Hi dgreen88, glad to hear you got a confirmed diagnosis and the drugs work. Your life should be much better in future with the correct treatment. Another illness that can mimic COPD is Idopathic pulmonary disease so you were right to investigate your symptoms. Best wishes to you.
I am so sorry to read how dreadfully bad your experience was but at the same time so very happy that you are now on the right course of treatment and feeling so very much better. Three cheers for you. All the best for your continued improvement.
Good to news, unfortunately a lot of GPs in the UK just go...smoking history = COPD here are some inhalers. I am happy you are getting the help you need.
These weren't just GPs though - they were respiratory consultants considered to be excellent. But they were also rather arrogant. I am going to bring them to account somehow so that they don't do the same to others.
What a amazing story. It's another example of relying on the doctor to correctly diagnose. Fortunately, it only affected you for 18 months. Some people are disdiagnosed for years and years.
I've learn to question my doctor and be more proactive. Beth
These weren't GP's but first one and then a second hospital respiratory consultant that misdiagnosed while I was in and out of there like a yoyo over the course of some months. I contested the diagnosis quite vigorously but they treated me like I was being difficult and insisted on their conclusions. I don't know what else I could have done other than ask to see a 3rd consultant and until a few weeks ago I didn't have the info about eosinophilic asthma to put forward. Meanwhile I must have seen a dozen different GPs and respiratory nurses over this 1.5 years but not one questioned the diagnosis even though I talked of my doubts.
Can I ask what do we look for in blood results . It also annoys me when docs say copd , which is unbrella term for emphysema, bronchitis, I have bronchiectasis which docs frequently call copd , it as finally isn't , so my consultant tells me , I also have asthma ? As in allergies which make my breathing worse
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