Asthma or not?

Hi there. I have just received the letter from my last hospital appointment stating 'we have never established whether or not you have asthma'. My list of diagnoses States: Lupus, restrictive lung disease, weak respiratory muscles, central sleep apnea and narrowing of the smaller airways, possible asthma and currently use Eklira and Flutiform inhalers (about to change to Anoro Ellipta).

I don't have wheezing and lead a healthy lifestyle but there are clearly triggers that cause hours of a niggling dry cough/SOB - generally in the evenings. Does it matter that the presence/absence of asthma is unclear? I have had several sets of PFT's this year And my recent Spirometry shows FEV1 2.3, FVC 2.6. My peak flow rarely limps above 250 but this seems to be my norm.

I would be very interested to hear your thoughts and thanks for taking the time to read this. Best wishes, Clare

6 Replies

  • Good Morning Clare, I am sorry that I cant offer you any useful advise but I would advise you ring the BLF helpline as I am sure the nurses could advise. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. xxx

  • Thank you Tadaw and Peege. I'm fairly new to lung conditions so probably worry too much about the details. I will call the Helpline next week - thank you for taking the time to read. Best wishes. Clare

  • Hi, as Tad suggests, I too think this is one for the experts at the BLF. Do give them a ring. They are wonderful. P

  • I have RLD and peak flow is not worth looking at, only as a benchmark. The link explains the differences well. I can have times the blue inhaler is only useful sometimes and no matter how many puffs I take I see no difference at all. When I did my Spiro test at the GP's I had 5 puffs of the blue inhaler after my first test waited 15 mins or so and did it all again and it showed no improvement at all.

    You mentioned weak muscles which could be the cause of the cough. Have they suggested PR?

    Be Well

  • Hi Offcut. As you say, the PF is of little use although my Consultant always wants the figures. I can't see that I do have asthma but he continues to circle the diagnosis. When you mention PR - do you mean physio? I asked for this either NHS or privately and was told that it wasn't available and that I would achieve the same result if I took up Interval training (?)! That's a joke as any exertion greater than a decent walking pace will have me coughing for hours.

    Like you, I get little improvement from the steroid inhaler. The Eklira is more effective but I hate the powder. I'm told there is no alternative in an attempt to save the environment . .

    Many thanks for your advice. Hope you're well. Clare

  • Hi Clare

    Yes Pulmonary Rehabilitation and I am amazed that your area does not have it! ( I would call your local hospital and ask what time they start just to prove they have one ;) ) I do know that they are always booked up but I went on one some years back and it was a fantastic help. Unfortunately I am now exercise intolerant so they will not put me in now :(

    My last bout of consultant visits I have seen 3 the first based everything on a 2010 Xray and refused to answer any questions but confirmed the lung capacity and RLD from my recent tests. The second was fantastic and spoke to me about all of the problems I have and how they are making me feel and that she was sorry but there is no magic pill for me and all they can do is try and slow the deterioration down.

    The third was a miserable guy the first 2 visits. He changed my tablets ( I have a couple of posts on that.) With the promise I will feel loads better after a month? A few issues later and doubling the strength it bought my heart back to a little bit of order but did nothing for my breathing? My last visit he was pleasant and was pleased my heart had settled and was now looking at other problems that may not be helping me, I am waiting now for results? When I asked about feeling better and the fact my breathing is not any better. He replied with I cannot do anything to improve that but the new tablets will help the Seretide be absorbed better! :( If you are taking Beta Blockers they reduce the effectiveness of steroid based inhalers.

    sorry for the long reply

    Be Well

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