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. )
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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