Another attack, another night in hospital

[floating_]

Feeling so rough and unwell, and I know compared to a lot of you this is nothing, but I'm just so frustrated. Had nebulisers. Back on pred. Spoke with my asthma nurse. Just feel very lost?

[twinkly29]

I think you're awaiting a referral? Or maybe that's happened? Did this happen after you stopped the pred you were on for the other condition? Just wondering if it was also helping your asthma and it finishing (if it did) wasn't appreciated by your lungs.

[floating_ in reply to twinkly29]

Had the appointment on the 17th, but had a phone call with the resp. clinics asthma nurse this morning and she was kind and helpful, but still seeing her on the 21st, and consultant in August.

I think you're right? Which makes me nervous for when this course ends? Was off for a couple of days, but steadily got worse again. My asthma nurse said she will get my GP to add a "rescue pack" (with steroids?) Guess that should help. But then I don't want to be on pred forever if I can help it. 😣

This is so frustrating.

[Bevvy in reply to floating_]

Rescue packs can be extremely helpful. Basically consists of one course of antibiotics and one course of steroids. Idea is that as soon as you notice symptoms can start treating. This avoids unhelpful delays contacting gp. Eg at weekends.It should be explained to you signs to look for and what to do. Also different gp practices then have different regimes. Some want you to contact gp once started on rescue pack others happy for it just to remain on repeat lists so you can replace once used. Certainly as a newby with rescue packs I think good practice would be to have to contact gp once started to use. It is also extremely important to contact gp if no better after taking meds. I often require several courses of antibiotics and steroids but any additional courses after first one is prescribed by gp. That way they are keeping an eye on me and aware what is going on.

[floating_ in reply to Bevvy]

Wonder if that's what's happening here? Like maybe I might need multiple courses of pred to get over this issue or something? My GP is on annual leave but er...idk, I'll see how I go with this, and if necessary see a different GP briefly (just hard because they all get overwhelmed withy issues which makes me feel bad. :/ ) could email my asthma nurse as I have her email and she said I can.

Thanks for the explanation though, was sorta confused tbh. 😂

[Bevvy in reply to floating_]

If you no better towards the end of this course of steroids you must contact gp surgery whether gp on leave or not. I believe it makes situation worse if having breaks between steroids and antibiotics. It makes it harder to treat infections. Also it might be different antibiotic is needed….Hope you feeling much better soon.

[floating_ in reply to Bevvy]

Thank you so much for your help. Will definitely keep that in mind!

[twinkly29 in reply to floating_]

Yes rescue steroids can be useful as it means if you're symptomatic/peak flow drops/whatever is on your criteria for starting them (which hopefully AN or GP will advise on) you can start them, then get it touch with them, rather than having to wait to make contact/for the appointment/for a prescription.

I am not pro rescue antibiotics as standard and I think often rescue packs are just steroids now. Yes sometimes people need antibiotics but very often asthma flares are not caused by bacterial infections, or infections at all. Not that other people's rescue packs are up to me 😅

I would hope that once they've found the right meds for you for your asthma (eg hopefully the spiriva will help but it's still new I think?) then the flares wouldn't keep happening and you won't be stuck on steroids - but for now they might be needed to keep things stable. If, towards the end of your course you don't feel "fixed" from this flare, it might be worth asking for a taper to them rather than a straight stop. Edit: yes agree re maybe a more sustained course of steroids might be needed!

If they start you on xolair for your other condition, it will be interesting to see if that also helps your asthma. I assume they haven't got as far as investigating that sort of treatment for your asthma but given all your allergies I wonder if it would help.

[floating_ in reply to twinkly29]

Yeah, like my peak flow keeps going yellow, sometimes red, but more often than not it's yellow lately, and I think my other conditions aren't helping (e.g. MCAS, hayfever, etc.), perhaps that's why things are so unstable. Problem is I'm maxed out meds wise in those areas (save for potentially Xolair, still doing the questionnaire!).

Yeah, I don't have an infection (they would've said if I had, especially with all the blood they took. 😂) so if there are antibiotics I don't need them (mucus is clear/white anyway).

Still waiting for Spiriva, that and I was prescribed the capsule one by accident (?) So will figure that out at some point. AN said she will contact cons about respimat instead.

Will keep in mind, maybe part of the problem is my body is so sensitive to medication it might just be struggling despite it being not a long time on it...? Will ask AN about it lol.

Hope so. I'll tell the AN about the Xolair when I know the official outcome (allergist basically says its in the bag, just need to dot some I's and cross some T's with paperwork!). Am I correct in assuming that mAbs for asthma are tertiary care too? Because if yes, then I'm only in secondary care. But is worth a discussion anyway!

[twinkly29 in reply to floating_]

Yes tertiary - though some lucky people seem to get to mabs really quickly (lucky in that they have the type of asthma that fits them and lucky that they have a consultant who gets on with it!)

Hopefully spiriva will be on the cards soon as it takes a while to kick in properly, or can do, but can start helping along the way so it would be good to get going with it in the hopes it helps.

It does sound like the pred was helping so maybe that is the way forward for now, even if it means a longer course and then tapering slowly to wherever you can get to to hold things, if you need something for now.

[hilary39]

I'm so sorry. It's always scary to be admitted to the hospital and to realize you're in such a bad place you can't treat yourself at home. What's the pred dose?

I just came off an intense flare and course of pred + nebs myself. It's so hard for me when I feel like I'm doing pretty well and then, wham!, I unexpectedly encounter one of my allergens and am knocked out for weeks. I empathize and hope you are taking it very easy, getting lots of rest, staying hydrated, and planning to check in with your GP as soon as you can. Take good care-

[floating_ in reply to hilary39]

Thank you. 40mg

Waiting for ambulance again. Unfortunately.

[Evesham]

I’m so sorry to read this. You feel so frightened. However two things that have really helped me. When being admitted onto a lung ward and recognising patients symptoms it strangely helped me feel not so alone. Secondly rescue packs are the way forward. As soon as you get poorly you can start medication without waiting to see a dr but do book a follow up appointment. Hope you feel better soon and get on top of this.