asthma/bronchiectasis

[ccccc]

Hello

I was diagnosed with severe allergic asthma in 2014 after many years of asthma.

Been under two severe asthma services now in the north-west (you may know which ones). the first just stuck me on steroids and I developed adrenal insufficiency, the second put me through a 16 week trial of Xolair which didn't work and after three reversibility tests have declared I don't have asthma *at all*. I strongly disagree as whenever I taper down my medication (seretide 500 to 250, or stopping it before the tests) my asthma gets worse, chest tightness etc. I feel like they are only catching me when I'm well or not seeing my symptoms as a whole.

Last autumn I was really struggling, the hospital refused to see me saying by email it wasn't asthma, I was back and to the GP numerous times. Things got better in Jan. Then this autumn, same again, coughing up clear mucus, tight chest etc. One of the GPs who agrees I have asthma sent me for a CT scan which revealed that it wasn't "anxiety" as the hospital was saying but mild bronchiectasis with minimal airway thickening. I had a second opinion from a (very expensive) private consultant who said "asthma cannot be ruled out" but the hospital disregarded what she said.

So I thought this might persuade the hospital something was going on but, no, they just said you may need antibiotics for longer when you get an infection, still maintained I don't have asthma, and discharged me back to my GP.

Went to see another GP who said basically there's nothing to worry about with the bronchiectasis as it's often found mildly in many people but did seem surprised at the amount of cough I have been having. She doesn't see the point in referring me to someone else "as they will just do the same tests the hospital did" and told me to go back to her in 6 weeks for a catch-up.

I just feel totally lost and frustrated as to what is actually causing these symptoms. I take lansoprazole as I have acid reflex. My gut feeling is it's asthma and that I should have some consultant cover because of the effect it's having, and not just be managed by a GP who can't actually do very much other than offer even more steroids. I feel like this period when I am struggling is the time to do get some tests eg spirometry rather than waiting 6 weeks, as this latest bout has been going on since September.

[Phoenix1992]

Hi,

Have you seen a respiratory physio and been checked for your breathing pattern? I see a few possible similarities with myself, looking quickly at your previous posts?

If I had a £1 for everytime a medical professional asked me if I am sure it is asthma, I would have a large pot of coins!

After 30 odd years of symptoms and loads of medication, I have been diagnosed with a breathing pattern disorder and asthma also confirmed (again.) I was referred to a consultant every decade from my 20s to my 50's. Interestingly, I had the worse experiences ever in a big city 'difficult asthma' clinic. They weren't interested in someone outside the box.

[ccccc in reply to Phoenix1992]

So frustrating isn't it - the same consultant who told me I didn't have asthma did a bronchoscopy in 2021 where they found bronchospasm at the bottom of my right lung - when I raised this with him a few months ago he said he'd probably "mis-appraised" it! No I think he did find asthma but now is pretending he got it wrong to get me off his list! And yes outside the box is definitely the term!

I haven't seen a respiratory physio, I was considering that, I found some exercises on the breathe train website which are good but also just angry at the tertiary clinic just washing its hands of me. It does feel like a slog getting the right treatment.

[Phoenix1992 in reply to ccccc]

The consultant I saw, had a respiratory physio in his department, she was also buteyko trained. She taught me a gentler version of Buteyko - no mouth taping.

I felt the same with the difficult asthma clinic - a lot of egos.

The final consultant I saw in a regular respiratory department was great, happy to treat me as an equal and was very interested in how I progressed and just as excited as me, with the changes happening in my quality of life.

I thought he would discharge me as soon as I was improving but he kept me on for a further 2 years as I slowly reduced my medication. He also said, to be referred back to him at any time, I had problems.

Worth requesting a referral to a physio, physios are so underated in my view in all areas of health. Maybe at a different hospital too. I don't know if they are based anywhere else.

I hope it's helpful for you if you do go down that route.