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?! 😆🤣🤪