Do I need to be more patient?

[Lotti_321-]

I’m after some guidance/advice. I’ve been diagnosed with serve allergic asthma on Omalizumab, Fostair 200/6 2bd & qvar 100 4 puffs twice a day, ventolin as required. On montelukast, carbocestine, fexodenadine, various nasal drops.

Had a flare up two weeks ago & had to attend a&E twice despite having 40 mg prednisone for 5 days. At that time my peak flow dropped to 290 & I was using over 20 puffs of ventolin to get through😬

Following a few nebs in a&E 2 weeks ago, I was given a further pred with reducing dose and antibiotics as a precaution. I feel 100% better than when I was in a&E but still not 1000%. I’ve now had two weeks of 40mg and from today begun reducing by one 5 mg tablet every 3 days.

My peak flow is now back at 420 (best in 500) & have been able to reduce my ventalin to 10 puffs of ventolin throughout day/ngt.

I’m a bit worried that despite the pred I’m still a bit wheezy, lungs feel twitchy , coughing mornings & during night and needing still so much vent and not having bounced back to being 1000% despite the high dose steroids. Do I just need to be patient for it to settle down?

I’m one of those awkward asthmatics that don’t always wheeze when listening or have drops in peak flow/ o2.

[Claire-Rose]

Hi it sounds like you have the same condition I have. I always leave hospital fine and drop back down within 24/48 hours I think it’s because I’m no longer having nebs and don’t have one at home so my body is trying to adjust to not having it what I usually do when I feel like this is monitor my peakflows , see how I am during the nights how often I take my reliever inhaler and if I am getting out of breath a lot easier than I usually do. I usually wait a few days or a week if things don’t settle down I will go to my Gp just to make sure I haven’t developed a chest infection or to make sure my gp isn’t too worried they might make me continue taking the same amount of pred till I feel better. If I feel worse I would end up going back to a and e and explaining what I have done and it’s not working so I’m back. I spend a lot of time in hospital and not once have they got annoyed or angry at me for going back as asthma is a complex and life threatening illness plus if you know how to deal with it you know when you can no longer have control and need emergency treatment. I hope this helps

[Lotti_321- in reply to Claire-Rose]

Thank you! That’s really helpful, I’ll keep a really close eye on things & access help if it gets worse.

It’s a week & half since A&E and have improved greatly since then. I probably need to except that it will take time for my lungs to settle down from all the inflammation. I just worry I’m never going to off the pred 😬.

[Claire-Rose in reply to Lotti_321-]

I think as long as you know your body and know how to recognise when you’re getting better, staying the same and getting worse I think you should be fine. I feel like I will be on pred forever too I’m on 50 not aloud to go past 40 till I see my consultant again but can’t get past 45 so doctors think I’m dropping too quickly so instead of dropping 5 a week I need to drop by 1 so it will take a while but I know I’m under a specialist and they will sort it out and I am sure the same will be done for you too once they get your asthma under control

[EmmaF91 Community Ambassador]

Hi

Sorry to hear you’re not doing well atm.

It could be that you need a slower pred wean, it could be that there’s still some underlying asthma. Have you tried contacting you team (local or specialist) for advice? They may be able to work out a plan for you to get control back. Generally with steroid weans the advice is not to drop if symptomatic.

Alternatively you could try talking to auk when they open back up on Monday to see if they have any advice! Hope this helps and that you feel better soon

[Lotti_321- in reply to EmmaF91]

Auk were really helpful, gave me the analogy of a broken leg and it taking time to heal. Likewise with my lungs taking time to reduce the inflammation.

The planned wean was from my hospital team, so will get in touch with them if symptoms persist. Think asthma is still reacting to what ever is triggering it.