Fed up of a&e/GP visits πŸ˜’πŸ˜–πŸ˜‘ does anyone have any advice?

So I'm back in a&e (3rd visit since 22-3) and have just been admitted again (I was for the last 2 - 4 then 6 days - hopefully only overnight tonight tho) and am completely fed up. Current diagnosis is (severe?) atopic asthma (tho get triggered by cold/stress etc too)

I'm having weekly trips to the GP and have done now for months, and topped it off with 2 this week (today and Monday). I keep bouncy between red and yellow zone on PF. Went 8 days without GP visit when on theophylline then showed signs of toxicity and got taken off again - best 8 days ever!

I'm next seeing hospital asthma nurse next Tuesday and I'm waiting on appts to see my resp consultant (last saw 2 weeks ago in hospital) and a new consultant at a specialist hospital.

I'm currently taking fostair 200/6, spiriva, montelukast, fexfenadine, carbocisiteine, prednisolone (back at 40mg from a weaning regime where I got to 30mg), flixonase (started today), ventolin, home nebulisers when bad (6 since Monday) plus omeorazole and adcal.

I'm in my final year at uni and have basically had to come to a stop for the last 6 weeks - no revision, no essay, no lectures, no clinic, and with finals now just a month or so away I'm desperate to be able to get on with my life. I struggle walking so exercise is a no ATM (this was triggered by walking less than 100m slowly).

As you can probably tell I'm feeling rotten and I'm frustrated and desperate! Does anyone have ANY ideas (medical or no) which may help get this back under control that either I can do or that I can ask about?

Thanks a lot

Emma

Ps apologies for typos/grammar/wrong words I have the neb shakes and am relying on auto correct!

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  • You sound very similar to me and I wish I had a solution but I'm still waiting to find one 9 months on from the first bad hospital admission and I've been admitted at least monthly since then. It's cost me my job at this point which is rubbish.

    Could they not have tried a lower dose of theophyllin? It took a while of going up and up to get the level right for me. Also you could increase the pred dose if they put it up (I've been on 50-60mg at my worst). I also got switched to the relvar inhaler which the severe asthma clinic told me was the best. Despite this I've still been struggling though so I don't think there are any quick fixes but you have my full sympathy and I hope you find an answer and some improvement soon!

  • Hi Arianna thanks for getting back!

    For me is now been about 18 months so the frustration just built until yesterday and I just had to vent 😳😳😳. It sounds like your in an even worse place cause at least I can almost work between attacks and it's uni so they would struggle to chuck me off the course esp as I graduate if a few months.

    Theophylline wise the HCA cocked up - had the bt on day 9 cause of Easter, late day 9/day 10 side effects started, taken off til bt comes back, return after the weekend and discover the theophylline check was never done she did a liver check instead. Cause they had no baseline GP wasn't happy to try again without consultant advice on brand/dose/what to do ethically cause side effect were very bad. Hopefully will see someone today and be able to ask them!

    Haven't heard of/tried relvar inhaler so I may ask about it later on so thanks!!! ☺️

    Mentally don't think I was in a good place last night/this morning (?), and I think I just needed to vent to people who actually understand πŸ˜³πŸ˜…πŸ€!! In a slightly better place now 😁

    Hope that you too start to get a semblance of control - If I discover the secret I will defo share it with everyone!!!

    X

  • awee emma have only replied to your post on mine now i find this hopefully your under control now and back home, or soon will be, take care hope to chat soon x

  • Sorry to hear this Emma, I was in a similar situation in 2014, a cycle of hospital admissions via resuss from Dec to June.

    I was sent to the Royal Brompton and admitted for 5 days to have tests runs as part of their difficult and persistent asthma program. My medications were amended and it was recommended that I started Xolair on a trial basis for 3 to 6 months.

    Xolair changed my life, I have the injections at the Royal Brompton every four weeks and have only been to hosp via a&e twice in the last two years and only one course of prednisolone. Most of the time it feels like there is nothing wrong with me, honestly I was so poorly in 2014. My asthma was triggered by colds and I would end up in hosp within 48 hours of catching a cold.

    Ask your GP to contact the Royal Brompton - I think other major Hosp's offer this treatment too but it's expensive so you have to fit certain criteria

    Good luck

    Mike

  • My asthma gets badly triggered by colds/flu and even after the infection is gone, I have hoarse voice - like laryingitis all the time. Badly breathless - I can barely get up a flight of stairs now.

    Is the Xolair good for asthmatics who flare due to respiratory infections? I feel my entire respiratory system from throat to lungs is in a constant state of twitchiness for months after a flu/cold attack. Last one for me was in January!

  • The way it's been explained to me it only works on allergic (atopic) asthma, so viruses/infections will still be a trigger.

    Sorry that you're going through a rough time ATM and that I can't be of any more use x

  • Hi Mike, thanks for replying.

    I'm currently waiting for my appointment to come through from Brompton my local hospital has been talking about Xolair for me for almost a year now (I meet all the criteria), been told it'll be middle on June (mid exam season) so currently both looking for to and dreading it.

    Luckily I've never been to resus nor have I been intubated (just multiple severe/life threatening attacks in the last 18 months) but have now been atmitted 5 (+?) times that I can count from the top of my head.

    I'm currently pinning all my hopes on it to help control my asthma so fingers crossed it works! I'm fed up of docs/nurses from a&e/amu/resp ward, recognising me, knowing my case and some now even know my name (they say hi and chat to me even if they aren't my official docs).

    I'm glad you've had such a great response from xolair so I really hope to follow in your footsteps

    X

  • I'm on xolair it's really helped me ... had a bad few spells since being on it but they have been due to chest infections. If you need any advise / someone to talk to about them just get in touch. .... they're not too bad when you get used to them I have 3 every four weeks.

  • Thank you Shassh 😊!

    So glad I joined this place last week (despite being a student [and still relatively young at 25] I don't ever use online forums etc) so for the last 18 months just been dealing with it all alone, probs why some of my posts can go on for a long time as I rant/vent about 18 months of a πŸ’© situations/experiences 😳!

    So glad the majority on here on xolair have good thing to say and relatively good experiences!

    X

  • Thanks for your reply Tigua ☺️

    Hopefully I'll be out soon - tho I don't trust the (non-resp) doc I saw this morning who told me it was just anxiety cause she couldn't here a wheeze in my chest (through 3 layers of clothing, 2 of them thick πŸ€”) So I could go home. I'm waiting to see resp nurse cause I don't trust her cause 1) my PF in middle red zone dropping into black (below 33%) when I walk to the loo and back, 2) I have a cough, tight chest, SOB and I can hear/feel the wheezeand 3) struggled to eat this morning cause of my breathing πŸ˜’. She told me because I was dressed (no change of clothes since yesterday evening) and smiling (my coping mechanism) then I obs wasn't doing too bad - this was after I told her I felt like πŸ’©.

    This doc also took a copd patient off of o2 cause 'the sob was caused by her heart'. This patient is on 30% o2 continuously at home, so no big surprises when she suddenly declined and the nurse had to put her back on o2...πŸ™„

    I'm hoping the asthma nurse will see me soon or else I'll take myself back to a&e cause the doc has lowered my pred to 25mg (had at least 1 severe attack every day for the last 5 days whilst on 30/40mg) and taken nebs off of my meds so the nurses can't give it without further consult 😀

    Sorry really annoyed and frustrated right now and I'm still feeling πŸ’© Esp cause I've only had a total of 50 mins sleep (in 3 parts)

    I am feeling slightly better than earlier now it's later and my meds have kicked in however so you never know... πŸ€žπŸ€

  • Just seen my hosp asthma nurse, whose put me back on regular nebs, and upped my pred back up to 40mg. She thinks I'll have to stay in but will talk to my consultant before she lets me know the decision. Happy that the AN basically did what I though she would!!!

  • This might be a crazy reply, and I don't know how your finances are! But have you thought of a one off private consultation with one of the RBH's doctors. It will cost about 250gbp. But it may get you up clinic list, and they may be able to tweak your regime to get you through exams if you tell them that's why you are coming. Because there are some treatments that can be prescribed that are not yet available on the nhs. (Unless you are on a trial). My consultant is not at RBH, however I could PM you his name.

    Only other stupid advice that I have is to spend a few days at the seaside, or on a boat. sea air always helps me. In fact one consultant I had said that the only thing he could suggest is goi g to live on a desert Island 🌴.

    I do hope you feel better soon

    R

  • Thanks for the reply!!!

    Unfortunately I'm having to self fund my final year at uni so really strapped for cash (currently because I've been off work I don't have enough money to pay my rent, and bills, and food so have had to dip into bank on mum and dad and pay them back after I graduate). Will think about it though esp if I still can't do anything after I graduate (and hopefully have a decent job not 6 hrs minimum wage a week) πŸ€”. If I do would it be ok for me to contact you for more info on how to go about it (hoping I'll be doing better by then but always good to have a back up plan!!!)

    Unfortunately the only people I know near beaches either have dogs (which I'm 99% sure after this weekend that I'm allergic too) or live in Australia/ New Zealand πŸ˜…. Don't think I'll be able to afford a visit them (no matter how much I want too).

    I know I too tend to be better on the front so I currently planning on moving to the coast after uni whilst I'm still unattached!

    Do you think the NHS would go for creating an island for asthmatics fully funded for our relocation??? (Somewhere, warm, nice beaches - Seychelles maybe??? 😝) Think how much less they would spend on emergency/maintenance treatments with us all way from fields/pollution!!! πŸ˜‚ - It could be called Wheezers Rock (this has really amused me, giggling I'm my hosp bed as I imaging it 🀣 - people are looking at me weirdly πŸ˜³πŸ˜…πŸ˜‚)

    You've defo cheered me up (and given me some idea for when I hopefully have some money!) even if I still sound like Muttley from Wacky Races when I laugh πŸ˜‚ X

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