Advice welcome

[Clairebear35]

Hi

This is a long post...

So back at the end of March, just as I had started to shield, I had an awful asthma attack, along with an insane temperature, I was shaking violently as I was so cold yet my temperature was at 41 by the time I was rushed to hospital. I spent the weekend in, they thought I may have had covid but my test results were lost so I’ll never truly know. My consultant decided to keep my meds the same but add in 40mg prednisolone for 5 days. There was no apparent trigger for this attack, it was late at night and I was watching Tv at home. Fast forward a few weeks, I become very SOB again and struggling massively so the gp put me back on prednisolone, difference being 30mg for 5 days then reduce them down gradually until I used my rescue pack up. One day off prednisolone and I ended up having another asthma attack, paramedics gave me nebs but as soon I finished them I went straight into another attack, by the 3rd time it was another hospital trip, by the time I got there I’d had 6 lots of nebs and I still wasn’t right. Chest X-ray clear, my PF didn’t drop and my bloods were all normal so again sent home with more prednisolone, antibiotics, told to take ventolin 6x every 4 hours, told to do a covid test and a follow up with the Dairs nurse. Again no apparent trigger which I’m struggling to get my head round. GP has since prescribed me fenofelaxine as she thinks it maybe hay fever, I do suffer with hay fever but on both occasions not had any of my usual symptoms. I have since discovered my PF doesn’t really change which has been put on my notes, I’m now waiting on a phonecall from my consultant to discuss the next plan of action as I’m still very SOB, lathargic and struggle to do anything. I currently take fostair 200/6, spiriva, montelukast and I’m down to 4x ventolin every 4 hours, I’ve also done the covid test and have to wait 48hrs for the results. The gp regularly tell me there’s nothing else meds wise they can give me and I kinda feel at a loss with it all and a bit scared that both times there was no apparent trigger, anybody had a similar experience?? Mostly a rant but maybe I can get some helpful advice.

Thanks 😊

[Statch]

Wow you have been through the mill so you have my sympathy have you ever been referred to a specialist lung disease clinic.

Got referred to one and am waiting to start biologic treatment but then covid hit so understandably got delayed.

Also has your theophyline level ever been checked as uniphyline is another treatment that is available helps me a lot.

Did use fostair but couldn't get on with it it seemed to make my chest hurt more so got moved to relvar ellipta 184/22.

So although gp says not a lot left of treatments there maybe a few things out there.

They still haven't found my trigger as such the specialist wants to do histamine challenge but wont as far to unstable

[EmmaF91 Community Ambassador in reply to Statch]

No point check theophylline levels if you aren’t on the theophylline/aminophylline... it’s not something we naturally produce 😅... thought you’d like to know (they only check when you’re on the drug to make sure you’re in the therapeutic zones, and not toxic/untherapeutic 🙈)

[nmcv13]

I take fexofenadine too and last year this was increased to twice daily which has helped. Agree that you need a referral to a Respiratory Consultant. Also do ring asthma.org.uk specialist nurses, they are so helpful. It may also be useful to research asthma treatment according to NICE online.Good luck.

[EmmaF91 Community Ambassador]

Hi

Sorry to hear how much you’re struggling atm

Like a few on her atm, it sounds like you’re possibly in post viral backlash (and tbh possibly from COVID in March). Post viral is almost always difficult to get control of, with such a range of symptoms and issues. There are extra meds that can be given for asthma, however most of them are at consultant level now, not GP (ie regular azithromycin, theophylline/aminophylline tablet’s etc), then after that you have specialist hosp meds (MABs etc).

However, if it is a post viral thing you are going to be feeling really rough for a while, and may find that typical maintenance asthma treatment doesn’t much help (it may do but not always)... I’m not sure if your PF used to drop and it’s not anymore, or whether you never did PF, but if it’s the former, it may also suggest post viral issues. They really suck and can take 6+months to get over properly, esp with the additional symptoms like fatigue, and muscle pains. Keep doing what you’re doing, keep letting people know when you’re struggling. Steroids and salbutamol seem to help you and relieve the issue short term, so hold on to that as a positive (because you do have something that helps). Hope your con phone call Goes well. And it’s always worth speaking to the AUK team and asking them for advice!

Good luck and hope you feel better soon

[Tengudreams]

Wow Clairebear you have been through a lot!!! Do you listen to any meditation music or guidance? Here is one of my favorites. Tuck yourself in tonight and listen to it. I wish I could help you but this is good for relaxing after a long day or when going through hardship. You are crazy strong, definitely inspiring!!!!

youtube.com/watch?v=KfEqviC...(Not working as expected?)