I’m feeling rather desperate. I have always had asthma that was largely well controlled, but in October I had a hole in my lung and air trapped round my heart. They don’t know if that was caused by worsening asthma or whether the breathlessness I was feeling was caused by that.
Anyway since then my asthma has been really bad and super sensitive to my allergy triggers. I’ve now been on montelukast since christmas alongside my normal fostair, which has made some difference. However, I am still so so sensitive to my allergies in a way I never have been but only in how much they effect my breathing- for example I grew up with dogs despite being a little allergic but now I can’t go home because my asthma dramatically worsens the second I get there. A big trigger for me is also dust mites which is super hard to manage.
I recently had a metacolin challenge test to see whether I could qualify for the biological injections on the NHS but apparently the test came back fine despite me nearly fainting multiple times whilst doing it. I had to come off my inhaler for two days before and I could barely breath so I’m finding it so hard if doctors are saying it doesn’t seem to be asthma. I’ve also seen an ent and gastroligist and been tested negative for silent reflux. I have an elevated aspergillius IgG count but the doctors seem to be ignoring that right now.
I know this is long but has anyone got any advice on what to do next? I’m 23 and I currently can’t work because it’s been so bad.
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You need to ring the asthma UK helpline on 0300 2225800, office hours. The nurses there are helpful and well informed. They will chat through this with you with no time limit and help you prepare an action plan.
I had a methacholine test, that was positive for severe asthma. However that was because my breathing was good when I started the test, so there was room for it to worsen. I do not know how the test works if your breathing is already bad when you start.
I've had negative methacoline and mannitol challenges ... the people in the know (doctors) have decided I do indeed have asthma... they just can't prove it (despite there best efforts)
I'm so sorry you're going through this. If I were you I'd ask for a CT scan to 'see' whats going on - especially to check the aspergillus isn't established in your lungs. If it is an antifungal would be prescribed to manage it. I do hope they get to tge bottom of this for you. Do give the helpline a call or copy your post to their WhatsApp number. Good luck,
I am so sorry to hear of your breathing problems. Strongly request a second opinion and further tests. You are entitled to a second opinion and there’s no reason why you shouldn’t get it.
I don’t know where in the country you live but people on this site talk of tertiary centres, hospitals like the Royal Brompton get favourable mention - ask to see someone there, write to them.
I’m afraid I don’t understand a lot of the tests and language connected to modern tests - which I haven’t had - but recently I read an explanation of eosinphilic asthma, wherein it was said that the eosinophils are white blood cells that line the surfaces of the lungs and cause severe constrictions of the tubes resulting from, or in, an over reactive immune response. Further, this was linked to sinus issues and middle ear infections and something else. I could immediately identify with this because as a child whose asthma would cause my lungs to seize up for three weeks at a time whenever I had an asthma attack - I was also frequently plagued with bad nosebleeds, abscesses in my ear and vomiting. It being Asthma, I had no symptoms on the day I saw the consultant as a 7 year old and he told my parents he could do nothing for me, my childhood was ruined, I had no ‘pump’ - as the then inhaler was called.
Get whatever support you can and insist on a second opinion. What would it cost them to give you one course of a biological treatment that you obviously, so desperately, need?
Another criterion for getting on a biologic is having been on prednisone treatment at least 4 times a year (others can correct me -- could be 5 times). This is how they got me on a biologic in the UK. So, make sure to take your pred when you are feeling sick, and have a record of this.
I have never had the methacoline challenge done, b.c. they were afraid to do it. Instead, they gave me vontolin/albuterl/nebulizer and watched the lung function improve. That, and variations in sprirometry from day to day, was enough to diagnose.
Thank you so much everyone for your kind and thoughtful responses they’ve really helped! I have a follow up appointment on Tuesday and I am going to be strong in asking for further tests for asthma. I think asthma is a hard thing for the doctors and other people to really understand which can make me feel quite lonely but it’s nice to have forums like this to feel like your less alone. I did also ring the asthma uk support line and their doctors were really helpful. Thanks everyone
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Have you been offered an allergy test?
