That awful place called Limbo!

Hi all,

Well I am stuck once agin in Limbo :( I've been here since Saturday and I have to say that it's beginning to get on my nerves.

I started my Xolair on Monday Yay!! and was reviewed by my cons at the time cos my lungs were playing silly beggars with a pf of 190 (50%) and a FEV1 of 30% but she was happy that i wasn't having an acute attack so said I could go home but my pf is not getting any better tonight it is a measly 150 my chest is tight but the usual no wheeze. I wonder if it might be worth paying a visit to my gp tomorrow as I feel that although I'm not acutely unwell that things are just slowly going down hill and are eventually just going to end up as admission. I should also mention that I am currently on 40mg pred and multidosing so can't do any more at home!

My gp is useless he did say to me the other day not to bother coming to see him for asthma and just to go to A&E as he's not going to do anything, but I wonder if I might at least get a referral to the admission avoidance clinic where i can see my cons and hopefully get a plan of action!

I do fear though that maybe I'm being over dramatic, as my cons didn't really seem concerned when my pf was 190, but I've never had a pf that low other than in an acute attack.



6 Replies

  • Is there any chance you could see another doctor at your GP surgery.

  • I am going to ask I think, and hope that I will get someone who will actually listen and maybe hopefully offer some constructive advice :)

  • Hey hun, sorry that you are still struggling :-( really hoping that you manage to avoid admission!! Has your cons given you any idea how long you should expect before seeing any sort of improvement with the Xolair?

    I have just changed GP practice after being unhappy with my old one for quite a while. They struggled with trying to control my asthma, but then rather than accepting that it is because I have NO control they decided that it was down to me. However there were a few occasions where I went to the GP (in the vague hope that they would have a magic wand, or tell me what I could do at home) and they said that while they weren't able to do anything about the current situation, but that they were able to send me in the MAU instead of having to go through A&E etc. So if you do need to go in, perhaps that is something that your GP (or as asthma girl has said) see a different GP.

    I think that a lot of us are struggling at the min. My lungs are being awful, I am not allowed below 40mg pred until my next cons apt, next week though (my GP wanted to put it up even further :-/), have yet another chest infection but suspect it may be viral as the antibiotics don't seem to be shifting it and my lungs don't like what ever pollen is about or the changes in weather!! Still (as I suspect you are too!) having to push it at home, multidosing and nebbing. I am not being admitted on 40mg though *stamping feet* (of course I will if I NEED to!). Was STUPID earlier as drove to my local shop and just shoved some money in my pocket. Got into the shop and realised how SOB I was, so reached for my inhaler to realise I didn't have it and then was awful by the time I got home.

    Do you have another cons apt soon? Hope you're feeling better soon!!

    Laura x

  • Hey Laura, yeah it does seem that loads of us are struggling indeed :(

    My cons did say that it would be probably the third or fourth session before I feel any difference but everyone reacts a bit differently, last time it took a 2 months.

    Ah yes the don't drop the pred till you see the cons trick, I have been on 40mg for 8 weeks continuous now and have the expanding physique to prove it lol but no indication yet of a reduction.

    I don't have a neb at home, largely because my cons knows me so well that she knows I would probably push it too far ( despite being a nurse, I absolutely hate being in hospital and I really don't cope with it well) and she fears I would land myself in ITU

    I'm sorry that you are struggling so much too, there just doesn't seem to be any letup for you at all! I hope your cons manage to come up with something next week!

    I don't actually have another appointment with my cons as she runs a clinic the same day as I get my Xolair so if there are any issues she can deal with them, the only down side to that is there isn't really time to ask her questions as she would see me between patients. I do have her email address and her aircall (bleep) number and I know I can get I touch any time but she is also the lead cons in the MAU in my hospital so I kind of feel that she so super busy and I don't want to be bothering her with something like this.

    Oh i have done the just nipping out thing without my inhaler, the shop is literally round the corner like 30secs away and I swear it feels like I have just done a marathon I'm so SOB by the time I get back, and I frequently get told off by my flat mates lol

    I hope you too feel better soon

    Becca Xx

  • I'm sorry you're struggling again :(

    Glad you got the xolair though ... Hope it helps!!

    I was in 'limbo' last weekend, on 40 pred and nebbing 2 hourly in the hope I would improve. I got an emergency gp app on the tues as like you was hoping for a 'magic wand' but unfortunately it never goes that way, luckily my gp is awesome and I know he tries to keep me out of hospital as much as he can but like you my peak flow was 150, sats were still ok though, was a bit tachy and wheezy so his only option was to send me in :( but at least like Laurs said I avoided a&e and went straight to the resp assessment unit (I'm lucky in my hospital we have a special unit lol). It was the right call though as by the time I got there (after making the necessary trip home to get supplies!) sats were 88% peak flow 90 and rising co2 etc etc.

    don't really know what I'm rambling about (still in hossie) but just wanted to stress to try to be sensible (hard I know) and id go see your cons if you can as she's more likely to be able to give you a plan.

    Good luck and hope you're feeling better soon!

    B x

  • Just wanted to say hope you start feeling better soon. Asthmatic limbo's not a fun place to be.

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