Hi all, just wondering if anyone has had any experience of this?
I’ve had four A&E visits this week with asthma attacks due to a chest infection. My consultant has tried me on various add on inhalers but they seem to do the trick short term and then long term my asthma goes back into the pattern of an asthma attack a month. This has been a way of life for about the past eight years, if not longer and it’s really beginning to get me down. At this point I’m willing to try anything as I’ve never let my asthma rule my life and I’m not about to start now!
Any advice/guidance would be gratefully received.
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RD23
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Sorry to hear that you’ve been so ill - hope you chest infection clears up soon!
Are you under a respiratory specialist hospital? Have you tried the biologicals (like xolair or Mepolizumab etc). For me that was what started to give me more control and require less hospital trips (until I started having reactions to the xolair). If you haven’t it may be worth asking about if this is a constant issue for you. I haven’t had bronchial thermoplasty (nor do I know anyone who has) but I think is it more a ‘last resort’ treatment...
I probably don't know much more than you but I am also interested given I don't qualify for biologics (non-allergic and non-eosinophilic) and my asthma is such a pain day to day on top of more flares.
A friend with very severe asthma is having it as she didn't get anywhere with 2 biologics. Too soon to tell how it works - it is stirring things up short term but that is expected. I did a bit of searching with her and while it's hard to find stuff, I do think the longer term results since it was introduced are reasonably encouraging and not necessarily deserving the extreme reputation it seems to have. For me I feel like it side steps the issue of what is causing constriction by making it harder for that to occur. Need to find a guide to the new criteria for patients as I can only find stuff on which centres can do it.
Thank you. I’ll take a look and see what else I can find.
Sorry to hear you’re struggling too, asthma is so frustrating. Xxx
LysistrataAdministratorCommunity Ambassador in reply to RD23
Thanks- sounds like you've had a terrible week mine is just baseline grumbling but I seem to be getting random flares a lot with no obvious trigger which is very annoying! Hope you feel better soon. Will be interested to see anything you find and will share on here anything I find.
Yeah it’s been a tough week, I keep finding my chest is tight in a morning and all the usual things I try to clear it aren’t working. I get the baseline grumbling, I describe it as my chest feeling grizzly as that’s the only way I know how to describe it! Xxx
A Dr told me when your lungs start acting up make... 1/8 tsp of turmeric . slice of ginger. honey.. Drink it all day I go through about eight cups. it helps.... The warmth of the water and turmeric and ginger calms down a flare up it works for me.... I hope your feeling better soon...
I was on the original trial for Bronchothermoplasty in 2006. I didn’t get the treatment. However it consists of 3 Bronchoscopies several weeks apart. Where they laser parts to the lungs. I was told that I would be eligible for the treatment when it became more widely available. However I have decided not to have it. Mostly because my current consultant is not so keen on it.
I do know that it has been very successful for some people.
Luckily my asthma is really under control at present and I am much weller than I was in 2006.
The thing that worries me about it is the long term outlook 10 years plus. As this is not reversible.
I would suggest looking into supplementing with bio pycnogenol from pharmanord company. I know of people who took it and their asthma improved a looot and also cases where they stopped using inhalers. If you do go down this route do not go for cheaper versions of this supplement please. It is worth the price. Good for lot of other health issues too. I am regularly taking it myself. Good luck and hope you feel a lot better soon
Read research on thermoplasty and I would not do it. A lot don’t benefit,and issues.
I read on new medical research and the uk is into it. The costs to national health are so great they are ignoring Big Pharma and looking for a cure. Funding some reasearch instead of blocking it is a big new game.
The biological look best best so far. Someone has posted a link. I would pursue that. You need better than you are getting.
I think the uk will solve it, it’s just it could be 5 years. I searched medical research asthma cures I think.
As well if you are on corticosteroids the suppression of dhea in the adrenal cortex makes lungs twitchy and reactive. Ie exacerbates asthma. Kirkman 60 to 90 minerals and vits has 12.5 mg dhea and from iherb.com is what I take, 1 only per day and will protect from lots of the side effects,
Thank you, I’ll make a note of all these and explore the possibilities with my specialist.
I have been using Relvar Ellipta and Incruse Ellipta for a few years and not had any serious attacks. They are preventer inhalers but don't give me oral thrush which was a problem before when I used steroid inhalers. Also I asked an asthma nurse at our local hospital what one single thing he does that helps ward off colds and chestiness and he said one vitamin c and zinc drink per day. They are available in Boots and a few supermarkets.
I’ve not heard of those inhalers, definitely worth a look as I find the inhalers I’m on just dry my mouth and throat out and I’ve lost my voice before because of oral thrush. Thank you
I was prescribed these by my consultant at our hospital's Asthma/Thoracic clinic. I have yet to come across a Doctor or Nurse that has heard of them. I have been on these inhalers for about three years. Look them up here or Google. D
I’m on relvar ellipta too and it is definitely one of the more effective preventers for me! I’m also on spiriva handihaler as I struggled using the respimat.
Also if you’re using your ventolin a lot I was advise to have potassium (orange juice has loads) to help prevent some of the side effects (tremors etc).
I have brittle asthma and have tryed every affordable treatment here in Hong Kong and will under go bronchical thremaplasty on the 26th of September. So my advice is read up on it and be well informed. This is my last chance at some type of a normal life. So I yours go's well. Please if you are unsure about it just drop my a mail. Asthmatim.
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mine is just baseline grumbling but I seem to be getting random flares a lot with no obvious trigger which is very annoying! Hope you feel better soon. Will be interested to see anything you find and will share on here anything I find.
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