My unicorn journey continues...

[mylungshateme]

So, ive been discussed at MDT again... as i reacted to benralizumab then was switched to mepolizumab again reacted within 5 mins... respiratory team have now said i cant have any interleukin (IL)-5–eosinophil pathway treatment, including mepolizumab and reslizumab that target IL-5 itself, and benralizumab that targets the IL-5 receptor (IL-5R-α). As well as magnesium, ventolin, and fexofenadine. Im also wondering about covid jab as each time im really unwell like with biologics as in bedbound for a week.

Anyway, respiratory nurse "concerned" and trying to get an urgent f2f with my consultant which will prob be mid Oct, also want scans/xrays of heart and lungs, and cardio stress assessment done. And more investigations into my lungs and airways... i reminded her that when i was admitted the cons stated i needed a cardio stress test but no one would listen an act on it! It took over a year before anyone listened and did 24 hr heart monitoring where cardiologist confirmed what i had been saying heart was fine it was long covid!

I also reminded respiratory nurse that when i got my 2nd opinion (because a jumped up reg decided i didn't have asthma but just BPD who was then proven wrong but delayed the biologics by 2 years making me do every test going) said another diagnosis which i have to look through paperwork for but basically hypersensitive irritable airways as well as severe uncontrolled allergic asthma and eosinophilic asthma.

She then mentioned vocal cord dysfunction and few other things i said as far im aware ive not got those as not had those specific tests but then again just because im the pt doesn't mean im kept in the loop!! So looks like back to the beginning AGAIN... to try an control my proper dodgy lungs!! Meanwhile still off work with asthma hopng to return next weekend... why can't i just be normal with normal asthma?! 😆🤣🤪

[Shezxx]

sorry your back at the beginin with it all. i dont know why they blame the vocal cord dysfucntion thing they do that with me its strange. they should be looking at the asthma side more like the nurse is trying to say to them.

[mylungshateme in reply to Shezxx]

honestly its like an emotional rollercoaster isn't it just when your given hope its gone again the prednisolone isn't helping stuck on it again and had to increase as adrenal glands weren't happy. 🥴 x

[Celie1]

All sounds like a nightmare! 🤦🏻‍♀️Hope they can find something to treat you that you don’t react to 🤞x

[mylungshateme in reply to Celie1]

just feel like starting to go round in circles again I just want a concrete diagnosis then i can be properly managed. Am i expecting too much? Im just having one of those weeks. Lol. Hiw are you doing. X

[Celie1 in reply to mylungshateme]

Its not expecting too much at all. You must feel so frustrated and annoyed, I really feel for you!

I’m ok at the moment thanks 🤞😁

Keep your chin up xx

[mylungshateme]

well fair play got an appointment come through with my consultant for beginning of oct! I'm feeling really worried though about what new potential diagnosis i could have. I know there is no point as not happened yet, but is everyone's severe asthma this difficult to manage and find treatment that works for you? I really had in my head the biologics would turn my life around like with others. Again i know we all respond differently to treatment i was just hoping so much it seemed my last chance of a better quality of life. Just feeling deflated i guess and wonder if i would get and better answers treatment if went private. Have any of you done this? Thanks for reading if you made it to the end without falling asleep!! 😆🤣😜🌻