Brittle asthma medication help!

Hi all,

I hardly ever post on here but I do read here from time to time and have always had great experiences and help in the past.

I am a brittle asthmatic - diagnosed feb 2000 am under the brompton under prof durham and debbie and under my local hospital - broomfield where i'm currently in reidence now.

I have been up and down over the last 10 years of being in itu to being able to leave a relitively normal life - so as you can see i vary so much!

Since having my son in may 2008 at 32 weeks after a very rough pregnancy spending the last 5 weeks of it in ITU I haven't been able to get back to what I feel is full health and i'm struggling mentally and physically with this.

My current medication is

pred 40mg

uniphylin 400mg BD

Singulair 10mg

Zirtec 10mg

Alendronic Acid 70mg

adcal d3

Azithromycin 250mg

Atrovent nebs 500mcg QDS

Ventolin Nebs - as and when - pretty much 2 hourly at the moment

am currently on 40% o2 (10lpm) and am saturating between 85-96%)

Am also currently on IV aminophylinne so not on the uniphyline.

Im currently really struggling I have 2 young children at home but am not physically well enough to get myself washed and dressed let alone look after them - take this morning for example I got out of bed on o2 with the help of a nurse and had a wash with a bowl and changed my pjs all with help of nurse which ended in my sats plumeting and 4 nebs to get over it.

Im also really down as I just can't handle this anymore - no one seems to have any answers my consultant is currently off as it the other consultant I trust, so no one seams to know what to do. I miss my children so much i'm exhausted as Im nebbing pretty much 2 hourly so not sleeping

I know some of you out there are drs and also there are a few brittles - what would you do? What other options do I have - they have mentioned sub - cut which I have used in the past. Are there any other options or do I just have to sit and bare it and get on with it. Im sorry to post such a down post but i really dont know how much more of this i can handle.

THanks in advance for any help

12 Replies

oldest • newest

  • Hi Charlie,

    Are you in B8, I escaped there on Monday!

    Sorry your having a rough time at the mo, It is a pain when the cons (Both of them?? Now that is not on! LOL) go away, Skiing I think! LOL!

    ( The docs were being too cautious when I tried to escape...)

    Do you take anything like Serevent or other inhaled steroids? Not sure if they will have any impact, there is also Tiotropium inhaler, a once a day one like Serevent for mainly COPD and is related to atrovent.

    Ummmm, s/c, did you just try bricanyl before? I use s/c Ventolin a lot of the time, well all the time since Jan. May be worth another bash as long as your skin is OK and good at absorbing.

    I am still nebbing lots and when in had to increase my s/c at night to avoid hourly nebbing as it is sooooo exhausting.

    Do the Brompton have any ideas, have Broomfield contacted them??

    Sorry, I can't be of more help at the mo... let me know if you need anything!

    Hugggs

    Love

    Kate

    XXX

  • Charlotte so sorry to hear how poorly you are in hospital again and struggling so much. You must be so fed up and im sure really missing being at home with your children.

    Did s/c make much difference to you? If so maybe its worth trying again. Ive been on it nearly 4yrs continuosly and dont think would manage without it although do think isnt quite as effective as use to be especially when really struggling as need to neb more and more often.

    What about inhaled/nebbed steroids?

    Really do hope things start improving for you soon and you are well enough to et home.

    Sending big get well hugs!

  • Hi Charlotte

    Sorry you are having such a rough time at the moment, I do not know the hospital your are in at the moment however I am under the Brompton. Have they been in contact with them, you could ask to be transferred to the Brompton, I have done this quite a few times when really struggling and getting nowhere. They may have some other ideas, and they could sort out SC if they thought it was a gd idea. I dn't know when you last saw them, but maybe they could check to make sure there is no underlying reason for the deteriation.

    Best of luck and I hope you have an improvement soon

    Libby x

  • Hey all thanks so much for your replies

    Kate - not sure where mr b is but mr j is off with family troubles. Dr H here and have a cons who not normally here but as doesnt know me is reluctant to do anything.

    Sorry well pointed out - i do take symbicort twice a day - can have more if i need it.

    I would consider s/c if i really had to just found it a complete pain and oliver is at the pulling stage - at 10 months was in here earlier taking my mask off trying to grab central line lol would have to keep it well hidden!! I aslo had real problems with my skin etc but like u say as ive had a rest it might well be worth it.

    Im just knackered with it alll now

    Thanks again - kate havent seen u for sooooo long x

  • Hey all thanks so much for your replies

    Kate - not sure where mr b is but mr j is off with family troubles. Dr H here and have a cons who not normally here but as doesnt know me is reluctant to do anything.

    Sorry well pointed out - i do take symbicort twice a day - can have more if i need it.

    I would consider s/c if i really had to just found it a complete pain and oliver is at the pulling stage - at 10 months was in here earlier taking my mask off trying to grab central line lol would have to keep it well hidden!! I aslo had real problems with my skin etc but like u say as ive had a rest it might well be worth it.

    Im just knackered with it alll now

    Thanks again - kate havent seen u for sooooo long x

  • Hi Charlie,

    Dr B = Skiing??? Dr H, OK but can be a be reluctant or too hastey!

    Yes, may be worth trying s/c again - Ventolin is better in my oppinion as you need less of it volume wise! Get some good pouches and stuff the whole lot under your clothing! B8 should have some sofsets (s/c giving sets) - I gave them a whole load!

    We must catch up.... perhaps when your sorted & home, sorry missed Oliver's Baptism, was in B8!

    Symbicort is quite good though I can't use dry powder inhalers. You can get Flixotide as nebs though Expensive!!!

    Anyway, Take care & let me know when you escape...

    Kate

    xXx

    PS are you accessing this on Pat line?? It blocked me the other week and I gave up!

  • Charlotte, have you thought of emailing Debbie shouting Heeeeeeeeeeeeeeeeeelp.

  • Kate

    Thought u said he was skiing?

    Yes on B8 but not stupid patline got 3g in laptop lol

    I haven't got debbie email address anymore - but that is a good idea - would you mind giving it to me in private message? Don't worry if not will get someone to try ring them tomorrow anyway - not alot happening now as weekend although did get oncall team out yesterday as had bit of a splat!

  • Hi Charlotte

    Hope you dont mind my pm?

    I am feeling like you at the moment. Am a single mum to a five year old. Have been in for 3 weeks now and still tied up to everything though am hoping to escape this week, for my sanity really cant cope not seeing my daughter.

    Was diagnosed brittle at 16 and have now been on 12mg s.c. bricanyl a day for 20 yrs (argh). If it works it works if not dont bother its a lot to cope with on day to day basis. I have had all sorts over the years methotrexate, cyclosporin etc. I am waiting to have genotyping done(blood tests that can see how well drugs work for the individual, there is a thread on the medical forum). I think its sometimes to easy for drs to just keep adding to the meds instead of taking things away, fingers crossed preds dont work for me lol!!!!

    Do you respond to magnesium iv, you can get them in neb form but beware i am great with iv but had anaphylaxis to neb, crazy but there you go.

    I hate relying on others to look after my daughterr, thats my job. I was never supposed to get pregnant, my consultant nearly collapsed when i told him, and had to promise never to shock him like that again ah ah! I was fine up til 25 weeks then asthma went down hill and had planned section at 36 wks, then came all the worrys about breastfeeding and all the meds but touch wood my daughter ok but gp gives her ventolin when got cough/chest infection.

    Sorry to waffle i am bored silly as i am sure you know.

    Any sign you going home?

    Take care and no more splatts please!!!!!!!

    Almo x

  • Sorry the computer whizz kid does it again. Meant to send pm. Hope not too much info about breastfeeding for everyone. Lack of o2 lol!!!

  • hi charlotte

    I really hope someone can pass on debbies email address to you soon or that the hospital inform her whats happening you must be really fed up!

    Almo is right magnesium can be given as nebs i was involved in a trial on nebed magnesium verses iv magnesium last year! I respond really well to iv magnesium but didnt do well with nebed magnesium myself. It didnt make me anaphylaxis but it did blister my throat and mouth and made me feel worse so be careful should you try that route!

    Maybe worth trying sub cut again tho! Hope things improve for you soon.

    Take care love and shovels kat Xx

  • Hi Charlotte

    I read your message about Debbie's e-mail and I have just messaged you with her direct line and her e-mail.

    I hope that helps

    Libby x

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