Hi I’m new here, after having difficult to control asthma all my life in the last two years things have gotten worse, multiple courses of steroids, hospital stays ect.. finally I have a appointment at wythenshaw hospital to look into antibody therapy my consultant at my hospital feels I would benefit from. Has anyone any experiences of this?
It’s been rough recently especially these past few months and I have found it difficult to explain to people and sometimes feel people just don’t understand how ‘just asthma’ can effect your life so much. I feel like my life is on hold.
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Bsr92
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Hi! I'm in a similar boat to you and my consultant has referred me to another consultant recommending Xolair which is the trade-name for omalizumab, a monoclonal antibody therapy... it's used for allergic asthma - do you know if this is the one you've been recommended for? I'm yet to see this new consultant but I've been scouring the internet for reviews - have read lots of positive things which is giving me hope! Fingers crossed you don't have to wait too long for things to progress... I hate the long wait for consultant appointments and then I imagine another wait to get on this new medication!
Hi sorry to hear what you’re going through (it sounds very familiar to me 😅)
I was on xolair for 6/7 months - it really helped me to start to control my asthma (managed to actually reach my maintenance pred level and drastically reduced inpatient time, however still ended up in a&e a lot 😒). Unfortunately I started developing hives and angioedema so it got stopped. I’m now on mepolizumab and hoping it will work even better!
I understand what you mean by people just not understanding! They expect you to be instantly better after your ventolin, and up and raring to go. Most don’t understand that not breathing is hard, and waking 2-3x a night every night is very tiring (you don’t even get the benefit of a mini me as most people say ‘well that’s what being a parent is like’ when you try to explain 🙄). The best thing I ever did to explain the tiredness aspect was the straw challenge with my friends (students at the time so willing to try anything 😉).
Keep going, life will start again and things can get better!
Carry on! It took them almost two years to get my cough-variant asthma under control. I sing in choral groups, and I had to drop out of almost everything because of the constant coughing and exhaustion. They will eventually get yours under control. You will feel much better. Maybe it will be sooner rather than later. Courage. Just stay with it, and don't let the jerks get you down.
Hi I can't say I've been through your asthma experience but what I will say is that I'm under the care of Wythenshawe for collapsed vocal cords. They are very good. I actually live in Liverpool but my local hospitals are useless for my particular problem.
I hope Wythenshawe are as good for you as they have been for me <3
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