Rant warning!!!

[Wheezycat]

I am having an annoying situation with my asthma. Since October, or longer, I have really struggled when walking at normal speed especially if it is cold or there are any inclines. I have also had a problem with recurring oral thrush with my Symbicort DPI, 200/6. I have managed the thrush, but told in october/November I needed to use MDIs rather than DPIs. Fine. After a lot of faffing on their part, I was finally prescribed Fostair 100/6 in January, 2-3 months after the whole saga started. No more thrush, and delighted that half the amount of steroids could work as well, neither better nor worse, than with Symbicort. But I still had/have the breathlessness issue. It has really hampered me in the last few months. I have struggled quite badly at times and often end up feeling exhausted when I do. So I managed to get myself on the Fostair MART regime, and increased to 6 puffs from 4. It stabilised my PF to earlier levels before all this started. They had not been bad, mostly in the green zone, just not hitting the level I used to be on. But I still have a problem when I go anywhere on foot.

So back to gp, who sent me för spirometry, chest X-rays and an MOT level blood tests (waiting to hear), but then bizarrely put me back on Symbicort, the MDI version. I have no idea why. I am sure it would work as well as Fostair, but would not deal with the problem of breathlessness on walking, and it would be twice the amount of steroids. I have just had a conversation with the pharmacist who is also confused. And I am nearly out of inhaler. The pharmacist has been told not to give me the Fostair, but she is out of stock of the Symbicort. And if she is probably others are, too.

Big groan! I am sure this will resolve - especially now since I have had a big rant - but far from sure my breathlessness issue is being addressed. Back to the drawing board!

[Js706]

Ugh to all of the faffing around without explanation!

I don’t know why they’ll have swapped but fostair and symbicort have different steroids in them, so although the symbicort might seem like more steroid the dose equivalent might be the same depending on particle size etc.

But I hope they get it all sorted and they can get on top of your breathlessness!

[Wheezycat in reply to Js706]

Indeed! That is why lovely Dehlia, our local pharmacist, and I were both puzzled! I have found a chemist that still has stock, and by tomorrow I need to Take Steps to get it if I still haven’t heard.

[Js706 in reply to Wheezycat]

Very bizarre! I do give up with some of the decisions sometimes...

[Wheezycat in reply to Js706]

Now I have heard......they have now returned me to Fostair 100/6....So nothing resolved, but at least I will have an inhaler! And now I will wait for the outcome of blood test and X-ray ( I’d be surprised - and concerned - if that shows anything!), and await my as yet not organised spirometry test, the first since 2016.

[ju-ju-]

Oh my life what a nightmare, I really feel for you. So much chopping and changing of meds, but ultimately not making a difference to walking. Its so important to exercise and be the fittest you can when you have asthma. I do hope they get it sorted and stop messing you about so you can get back to exercising.

[Wheezycat in reply to ju-ju-]

To be fair this GP is lovely, but I suspect overwhelm with all that she has to do so she is failing to grasp or remember the central message. Also, though going out always feels like a major excursion, with worries, I am essentially well. I am not trying to deal with hospital doctors who refuse to grasp issues while struggling to breathe. But, oh , yes, so frustrating! My other half is so concerned he has come along to several appts to strengthen the message. May be I should think of a third person to come along next? Or turn it into a song we can perform in the surgery? I am sure they would then notice.

[Poobah in reply to Wheezycat]

I too have struggled with breathlessness when walking, especially inclines, and it's only got worse over last 5 years. Changed from Symbicourt 200/6 (4 x 2) to Fostair 100/6 (2 x 1) recently. Breathing improved a bit. Asthma nurse explained smaller particles reach further into the lungs where they're needed.

But still not where I used to be peak flow wise.

Admittedly, my weight has increased thanks to Symbicourt and consultant believes it's the weight that is the problem. Unfortunately, Fostair, despite the low dose, has given me an appetite.

So my question to you, has anything changed from when your PF was very good?

Asthma nurse is very keen on exercise and insists on daily walks.

One thing that has helped me is a power breather, a hand held contraption I bought on Amazon. Place in the mouth and breath - it resists your inhaled breath, exercising the lungs. Using it daily, especially before any sort of exercise wakes up the lungs and they become more flexible (only way I can describe it). Mine was less than £20.

You're not alone and I hope you find a resolution.

[Wheezycat in reply to Poobah]

Altogether it sounds very similar, including weight gain. My weight gain is mainly since the last 6-9 months.........through careless eating. It hadn’t occurred to me that Symbicort could do that, though I am well aware steroids can. I though the levels were too small.

I got myself onto MART with my Fostair 100/6 recently, and since then I have taken 3x2 every day and my PF has improved with that somewhat. Not loads but more where it ‘should’ be. I have also re started taking Omeprazole daily.

Go for a walk daily? How? I also do try, but any distance is sooo exhausting if I walk anything but very slowly. Sure we need to exercise, but some other ideas? I go to circle dancing, which is indoors. It is just once per week, term time. I also do yoga, a very, very gentle version, and I am trying to remember to do a bit of very basic tai chi at home, but I often get side tracked. I also have a cross trainer, but it is soooooooooo boring! Still, if I can distract myself I can do a bit of that. And I am thinking of getting a hula hoop. Maybe.

I got myself one of those breathing trainers recently, but again forget to do it. I must sharpen up on that one.

[Hidden in reply to Poobah]

Hi poobah,

The power breather sounds a good idea.

Had a look on Amazon and the cheapest is around £40, so looks like you got a bargain.

Did it make much difference to your lung performance, and how long before you noticed any difference.

[Wheezycat in reply to Hidden]

It was much less than that when I got mine from Amazon very recently, since Christmas. Much nearer £20. Perhaps someone has run out of them thus the price increase. Or check on eBay if there may be some there.

[Poobah in reply to Hidden]

If I remember to use it daily the results are acceptable. I can only describe it as making lungs more flexible. Usually they feel like they are made of stone when I walk.

Physio linked to the asthma clinic explained that some asthmatics are prone to bad breathing techniques so she was happy with the power breathing instrument - anything better than nothing in her book.

But with asthma it's all about regularity. No good taking meds now and again or exercising now and again. I say that as the world's greatest procrastinator.

[Poobah in reply to Hidden]

Just found an Ultrabreathe Adjustable Resistance Lung Breathing Exerciser for £11.80 on Amazon.

You can adjust the resistance which is good as you get better at the breathing technique.

[Hidden in reply to Poobah]

Hi,

I missed that one, many thanks.