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Old 25-10-2018, 03:27 PM
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Help With Asthma

Hi all,

I'm writing because I'm hoping someone out there might have some advice for me about a form of Asthma I have, unfortunately because they suffer from it themselves.

I got Asthma as a young man, which reduced to an irrelevancy soon after I moved to London after Uni. I'd get the odd attack, hit the inhaler and be better within 30 mins. After awhile, I stopped carrying the inhaler.

But after over twenty years, the Asthma seems to be back with a vengeance. It started in December last year but with far worse symptoms; the attacks last all day or even for two days straight sometimes. None of the inhalers prescribed to me did anything. Then I got various oral steroids, which did nothing, followed by Montelukast, which might help a little but not enough to make life livable. I am constantly a little out of breath, at best, with talking in complete sentences difficult. At worse, I feel like I'm trying to get air through a straw and can only get by heaving in air and sitting up with my chin tilted back to straighten my airway. Sleeping horizontally is hard because it restricts the movement of my lungs. I can't say how many times I've considered going to A&E or made my peace with God at four in the morning. The attacks are far worse at night due to hormone level changes that happen to us when we are winding down to sleep, apparently.

I'm giving all this detail because I wonder if anyone else out there has gone through a similar ordeal and found a solution? Or is there a BBS doctor out there who can advise?

I should point out that the one bit of info I have received from doctors after having all sorts of tests is that I have high levels of Eosinophils in my blood, a particular white blood cell that causes inflammation of the breathing passages and sinus through overreaction to allergens.

After doing my own research, I found out I likely have Eosinophillic Asthma, a subset of the disease that has different triggers and, surprise surprise, does not react to traditional therapies. It is fairly rare, tends to hit asthma sufferers between 35-50 years old ( I'm late forties ) and is often not diagnosed as a distinct variation of Asthma, requiring other therapies, due to ignorance on the part of doctors.

Apparently, there are drugs for this variant of the disease that lower blood-based eosinophils and can represent a complete cure ( Benralizumab / Mepolizumab / Omalizumab / Dupilumab ) but some seem not to be passed in the UK yet or very expensive. I'm planning to visit my GP to ask for one of these drugs and I want to be as well-armed as possible when I do.

So I was wondering if any BBSer here has been diagnosed with Eosinophillic Asthma and whether they either got any of the drugs above or any other therapy that worked for them? I'll try anything right now as I can't imagine going through life like this. Any advice would be appreciated.

( BTW, I've brought special mattress and pillow covers to cut down on dust mites, hoover religiously, take antihistamines and drink wheatgrass, based on a friend's recommendation. I've also ordered a humidifier. )

Basically, if anyone could offer me any advice, especially someone who beat this condition, I'd be forever grateful. For various reasons, I'm having a very hard year financially over the last twelve months and I need this like a hole in the head. Sorry for the long mail but felt I should get all the info out there for anyone who might be qualified, either medically or through experience, to help.

( Please help. So scared I will die before seeing Palace score a home goal. Yep, still able to make jokes at least. )
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Old 25-10-2018, 03:46 PM
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I've never had asthma but do suffer a bit with a few allergies - in relation to this insect related stuff and mould. Maybe you could get get out of your gaff for a couple of days and do a bunch of those insecticide burner things and a bunch of fungal spray (get a proper mask btw) then come back and do vacuuming and spray disinfectant.

You never know, it might just solve a problem and it's never bad to do the odd 'deep clean' anyway.
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Old 25-10-2018, 04:13 PM
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Originally Posted by FORZA SELHURST View Post
I've never had asthma but do suffer a bit with a few allergies - in relation to this insect related stuff and mould. Maybe you could get get out of your gaff for a couple of days and do a bunch of those insecticide burner things and a bunch of fungal spray (get a proper mask btw) then come back and do vacuuming and spray disinfectant.

You never know, it might just solve a problem and it's never bad to do the odd 'deep clean' anyway.
Cheers. I'll look into that.
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Old 25-10-2018, 07:27 PM
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Anything change in 2017, home or work?

Seen any consultant's?

Other blood work?

Other symptoms?

Not a Dr btw but trying to navigate my way through Healthcare with my own peculiar and disabling woes.

Apart from other things air freshener brings on a really fluid asthma attack in me, looked at that? Plug ins, diffuser, candles etc around the home? Or work?

I would want to rule out allergy.

My experience of GP is they would not prescribe that sort of drug but would refer you to a consultant.
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Old 25-10-2018, 10:22 PM
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Originally Posted by Vendy View Post
Anything change in 2017, home or work?

Seen any consultant's?

Other blood work?

Other symptoms?

Not a Dr btw but trying to navigate my way through Healthcare with my own peculiar and disabling woes.

Apart from other things air freshener brings on a really fluid asthma attack in me, looked at that? Plug ins, diffuser, candles etc around the home? Or work?

I would want to rule out allergy.

My experience of GP is they would not prescribe that sort of drug but would refer you to a consultant.
I got referred to the hospital respiratory wing, where they gave me lung function tests. I am awaiting an X-Ray. My nasal passages seal up as well as my throat / lungs and the high Eosinophils effectively means my reaction is allergic in nature, although skin prick tests revealed an allergy only to dust. I don't have an air freshener, diffuser, candles, ect, such as you mention. I am surrounded by main roads, living as I do up in Bounds Green, so wonder if pollution is a factor, but the weird thing was that my breathing issues got way better over the summer when I had the windows open all day. Basically, I'm playing guessing games.

I think you are right and I'll need to see a consultant. I hope you are wrong about those drugs being unavailable since they seem to work, according to testimony. Thanks for the reply.
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Old 25-10-2018, 10:51 PM
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Pay to see a private specialist. My mother was in a terrible way with respiratory problems and if she hadn't gone private would be dead by now. It took one consultation and her new prescription solved her issue. Has been fighting fit for years since.
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Old 26-10-2018, 07:34 AM
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Quote:
Originally Posted by SOUTHGATE EAGLE View Post
I got referred to the hospital respiratory wing, where they gave me lung function tests. I am awaiting an X-Ray. My nasal passages seal up as well as my throat / lungs and the high Eosinophils effectively means my reaction is allergic in nature, although skin prick tests revealed an allergy only to dust. I don't have an air freshener, diffuser, candles, ect, such as you mention. I am surrounded by main roads, living as I do up in Bounds Green, so wonder if pollution is a factor, but the weird thing was that my breathing issues got way better over the summer when I had the windows open all day. Basically, I'm playing guessing games.

I think you are right and I'll need to see a consultant. I hope you are wrong about those drugs being unavailable since they seem to work, according to testimony. Thanks for the reply.
Not sure if it would be difficult with constant asthma as it might make breathing harder but to confirm the allergy part maybe try a n95 or higher rated mask and see if it gives you any relief.

Really worth scrutiny in to anything that changed in December 2017.

The wait for an appointment to see a specialist are at least 3 months longest I had is 25 weeks so don't hang about seeing GP.

Private you are looking at £160-£250 but tests could crank that up but most will refer you back to their NHS clinic for tests or long term treatment, normally a lot quicker than 3+ months to get back in to their clinic.
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Old 26-10-2018, 02:12 PM
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Hi matey,

I-m an asthma sufferer and my history was pretty much the same as yours. I had it as a child, grew out of it then recontracted it in my late 20's (apparently due to working in smokey pubs). I controlled it using ventolin and becotide, then when I moved out here to Spain it all but disappeared. My inhaler use dropped to maybe one puff a month.

Then last year (about now actually) it came back with a vengeance, I woke up in the night gasping for air, this wenton for days, then seemed to settle, with me just waking up the once in the night needing my puffer. But the useage escalated, i went through more Ventolin in a month than I had done in the previous 5 years (one good thing is that its available over the counter here for €2:50). I went to the docs and they just put it down to a change in the seasons etc.

Then something strange happened, I was diagnosed with stress related depression, started counselling etc and, during all that i went back to the UK for some headspace, I took all my inhalers with me.....and didn't use them once. This coincided with my depression and stress being brought under control. Since then things have been pretty much back to normal. It has been suggested that this flare up (which started when my daughter was rushed to hospital with perontinitis) was linked to my condition.

As someone said earlier, have there been any changes in you life since last year? Might be an avenue to look down.

Good luck with it.
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Old 26-10-2018, 09:48 PM
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Quote:
Originally Posted by Maidstoned Eagle View Post
Hi matey,

I-m an asthma sufferer and my history was pretty much the same as yours. I had it as a child, grew out of it then recontracted it in my late 20's (apparently due to working in smokey pubs). I controlled it using ventolin and becotide, then when I moved out here to Spain it all but disappeared. My inhaler use dropped to maybe one puff a month.

Then last year (about now actually) it came back with a vengeance, I woke up in the night gasping for air, this wenton for days, then seemed to settle, with me just waking up the once in the night needing my puffer. But the useage escalated, i went through more Ventolin in a month than I had done in the previous 5 years (one good thing is that its available over the counter here for €2:50). I went to the docs and they just put it down to a change in the seasons etc.

Then something strange happened, I was diagnosed with stress related depression, started counselling etc and, during all that i went back to the UK for some headspace, I took all my inhalers with me.....and didn't use them once. This coincided with my depression and stress being brought under control. Since then things have been pretty much back to normal. It has been suggested that this flare up (which started when my daughter was rushed to hospital with perontinitis) was linked to my condition.

As someone said earlier, have there been any changes in you life since last year? Might be an avenue to look down.

Good luck with it.
I have to admit I have suffered from mild depression and was taking a very low dose of antidepressant until the end of last year, when I decided to give it up. I wanted to see if I could go forward without the crutch of antidepressants because I like to think I have been far more at peace with myself in recent years.

The reason why I didn't ascribe this year's asthma escalation to a stress no longer controlled by drugs was because I was producing actual mucus and getting weird results in my blood work, especially the high eosinophil levels. I couldn't see how coming off Citalopram would cause Asthma unless stress itself could literally change my blood chemistry. I did some research as to whether stress causes such white blood cell elevation and there doesn't seem to be a link that I could find. Despite having a tough year outside of this health issue, I also wasn't feeling particularly stressed so didn't feel I was suffering some kind of psychosomatic manifestation such as asthma. I know stress can be buried in the subconscious but I felt okay, way better than when I had the depressive episode that began my use of Citalopram over a decade ago. Maybe I was a fool for ever going off the pills but I wanted to try.

However, because of the stress caused by these breathing issues, along with the tough few years I've had, I decided to go back onto Citalopram a few weeks back. I figured it might help me get through the nights at least. So far, the drug has done nothing to make me feel better and I am considering doubling my dosage compared to what I used to take before. Because it deadens my mind and makes me sleepy, I wanted to try living without the drugs but I guess I will never be free of it. In the meantime, I'm trying to look at the asthma as a physical issue. I went for an XRay today at North Middlesex Hopsital and am trying to step up exercise to improve my overall lung function.

Perhaps you will be proven right after the pills finish kicking in and the whole thing will turn out to be 'in my head.' I hope so. Even if it makes me reliant on pills the rest of my life, at least the constant breathing issue will go away.

Btw, thanks for the advice to all posters who have responded. Most kind.
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