Brittle Asthmatic - 25 Years old.

[Tysum773]

Hello,

I'm a young man from the UK I've been an asthmatic all of my life.

As a young baby maybe 1 month old, I contracted TB (Tuberculosis), at the same time i had bronchitis and pneumonia so as you can image being so young and fragile i was extremely unwell and nearly died, In fact i was ventilated and only just pulled through!

Here we are 25 years old, I have many diagnosis's in my life, Fibromyalgia, CFS, Mental health issues and much much more.

I am a brittle Asthmatic i was admitted 4 times in 2018 for my Asthma.

I was in hospital Boxing Day 2018 until New Years Day - 2019 (7 Days) on my last emergency NHS admission.

I don't respond to steroids very well, highest dose I've ever had is 12 daily (60 MG) they don't make a lot of difference.

The admission previously to the one mentioned above, I was placed into a High Dependency Unit, I had a 24 hour Salbutamol infusion and magnesium, it wasn't a very nice experience you can't move because of all the monitoring equipment and wires attached to your body.

Now again Today is the 24/01/2019, I've recently contracted a viral infection / flu type symptoms and this always ends BAD for me.

I'm currently prescribed an at home nebuliser, with Salbultamol and Ipratroprium Bromide (Atrovent) I only got the nebuliser yesterday and I have an appointment with my Asthma Nurse tomorrow, She will be prescribing me the medicine to nebulise.

Out of hours doctors came to my house last night and gave me a couple of packs of ampules just to get me through until the appointment tomorrow.

So Yes, I am a 25 year old brittle Asthmatic - early signs of COPD, I nebulise at home but this won't keep me out of hospital.

How much longer can life go on like this ?

ANY cold, ANY flu, ANY virus of ANY kind and i am in hospital a week or two later, and my admissions last from 1 week - 1 month!

I smoke, I smoke a lot of cannabis also to help me deal with my pains and relax my mind, I have purchased a vaping kit recently and shall try to give up the smoking.

[Tysum773]

Is there something else going on that i should maybe ask my doctor or asthma nurse to investigate ? 4 admissions last year. and 1 upcoming this year.

[WheezleSneezle in reply to Tysum773]

I am also a brittle asthmatic. I'm in hospital right now for my 5th admission in less than 6 months. I spent 11 days in hospital over Christmas and was discharged on New Year's Eve. And back in again as of this last Wednesday.

My medications when I'm well are salbutamol nebs every 4 hours, atrovent every 6 hours, budesonide (steroid) nebs (via Pari LC Sprint Star fine mist neb) 3x a day, intal forte inhaler 4 puffs 4x a day, montelukast, long term prednisolone and mepolizumab injections. I have had a lot of HDU and ICU admissions but not since starting monoclonal antibody injections. First I was on omalizumab (igE inhibitor) for years but that only treats allergic asthma and mine is eosinophilic, not just allergic. Recently they switched me to mepolizumab (inhibits eosinophils) and we're hoping as the injections reach peak effect that I will be able to wean off the prednisolone which I have been taking constantly since July. I was on 75mg a day and now down to 25mg so wish me luck!

If I were you, I would find some other way to take cannabis than smoking it. There is no way I could smoke anything without dying but it is possible to take it orally and if you google around there are actually some quite good recipes which use it if you were so inclined. Feel free to send me a private message if you want to know details of the one I like.

I'm glad you now have a nebuliser at home. I'm surprised you only just got prescribed one. The thought of living with brittle asthma without a neb at home is scary. I can't go without mine for longer than 4 hours and would be dead a million times over if it didn't exist.

Monoclonal antibody injections are the meds that made my life liveable. Before those, I was a frequent flyer in ICU and not expected to live much longer. It's a shame those meds were not invented years before because my lungs are damaged irreparably from the asthma attacks, infections and being intubated so many times. My FEV1 is currently 21% although baseline last year was 32%. I hope it returns to or exceeds that baseline because it's miserable the way it is now. But at least now there is lifesaving treatment available. I'm not sure if they would consider you for something like that without being on or having tried and failed more meds and not smoking but if all else fails it's potentially an option.

I hope you don't get too sick from the virus you now have. They are bad news.

[emmasue]

So sorry to hear this. You have had a difficult time of it. Have you tried ringing the nurses at Asthma UK? They may be able to advise a way forward. They are very clued up on modern treatments. I would try to give up smoking. I have never smoked and I still have bad lungs but I always think it could be worse. If you feel the need for cannibis, I think there are ways of taking it without smoking it, but that is not my area of expertise. Good luck and I hope you find a better treatment soon.