New here and need your advice!

Hi,

Have been reading the forum for a few days now and just about feel confident enough to post again-I joined whilst I was pregnant as my asthma really deteriorated and got some excellent support and help on here.

Will that pregnancy is now a nearly 5 years old daughter!!

My asthma is brittle/difficult and I have had good times and bad but at the mo its not so good.

My chest cons is fab and we have a great relationship and work really hard together to getting my life in control of my asthma rather than my life being controlled by my asthma.

Anyway, enough of the rambling and onto the questions.

I was just wondering what drug combos any other brittles on here are on?

I'm not sure if you are allowed to tell me but if you could it would be great to give me ideas/suggestions for my next cons appt.

Also, I am wanting to buy a new neb and just wondering what is the best one for portability and quietness?

Well done of you are still reading and thanks for helping x

12 Replies

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  • Hi fb,

    I am on:

    Salbutamol ihnaler

    Symbicort smart system

    Spiriva handihaler

    Montelukast

    Salbutamol tablets 4mg

    Prednisolone (maintenance dose grrrrr)

    Cyclosporin as a steroid sparing drug

    Salbutamol nebules

    Omeprazole

    Adcal

    Alendronic acid

    Hope this helps, I know how tough it can be being a brittle with a young child (my son is 6) ao hope you manage to get some control. Mines still a work in progress!!

    X

  • Thanks for your reply and bothering to take time out to help me.

    Your drug list is pretty much the same as mine except I have budesonide and oxis in separate turbohalers and have atrovent nebs too.

    I have heard about Spiriva-what role does that play with the asthma-is it a long acting bronchodilator /steroid or something slightly different?

    Hope you are keeping as well as possible x

  • My (lung related) drugs are:

    Seretide

    singulair

    oxeol

    pred maintenance

    bricanyl tablets

    bricanyl nebs

    atrovent nebs

    Buenoside nebs

    omeprazole

    kestin

    cetirizine

    mine is pretty fixed now apart from trying to reduce pred.

    Hooe you find the best treatment for you and things start to improve soon.

    Rose xx

  • Thanks Rose for your input.

    Yours too is very similar but just with different types of the same meds IYSWM!!

    Never heard of oxoel-just googled and seen its a long acting broncho-what role does it play as you are on seretide too-is it just so you get a double whammy?

    Is that the same reason for the bud nebs too-I used to have mu budesonide via neb but now use 400 turbohaler as I get similar amount and its much quicker, especially when you've got kids who are wanting a piece of me every few minutes!!

    As well as generally being not good at the mo my nocturnal symptoms are my biggest bug to bare at the mo.

    I used to have singulair and 2x uniphyllin tabs at night but have had repeated admissions of tachy around 180-200, without a flare up of my asthma so I was taken off uniphyllin as they can cause tachy but asthma is not good at night now?

    Any suggestions of combinations I can try greatly received

    Thanks x

  • Thought I should add my drugs list so you don't suggest things I already take!!

    Ventolin inhaler

    Ventolin nebs

    Atrovent nebs

    Pulmicort 400

    Oxis 12

    Maintenance Pred

    Singulair

    Loratadine

    Beconase nasal spray

    Calcichew D3 Forte

    Cyclizene

    Carbocisteine

  • Yes the budenoside nebs and seretide and oxeol tabs all just have the same effect but more of it so it might work more/better is the idea. I forgot to add vento inhaler its just so obvious to me lol. I did have aminophylinne at one point but like you it causes heart probs or rather worsening of existing probs so was stopped for that reason.

    Rose xx

  • ARGH!!!!

    Just wrote a lengthy reply and lost it!!

    Thanks Rose, I thought as much but thought I'd double check!!

    As yours and Angelicas lists are pretty much similar to mine, I don't think theres much else I can add/try.

    Do you know anything about Spiriva that Angelica uses?

    I guess I am just clutching at straws really-I just thought one of you brittle/severe asthmatics may have found something that works that I haven't already tried /are using (well works until the next attack anyway!!)

    Thanks again x

  • Hi FB!

    I too am a brittle, use the spireva which seems to help, plus pred from time to time though I am resistant to it, I also take uniphylline occasionally as it seems to work better for me when poorly IV rather than as a maintenance, I am on the s/c terbutaline pump too.

    My inhaled steroid is Ciclesonide, a fairly new one on the market that has very small particles so gets right down in the lungs, also doesn't deposit in the mouth so if you have a problem with thrush in the mouth it may be worth a switch.

    I live quite an active life and work part time as an outdoor instructor teaching climbing and kayaking mainly, I am very brittle but being other than over weight quite fit which I think helps me cope generally.

    I don't have any kids so can't help there but good luck, hope this helps.

    Neb wise I carry the pair walk boy everywhere I go, it is not the quietest but does the job, I take an moron kayaking with me as it is smaller, but wouldn't like to rely on it these days.

    George xx

  • Thanks George.

    Could you tell me what role spiriva plays?

    Thanks for the info on Alvesco-you say it seems good for you-what steroid inhaler were you on before?

    On admission I usually have IV aminophylline, salbutamol and hydrocortisone along with whatever else is needed, depending on the cause for attack etc.

    Are you under the Birmingham Brittle clinic?

    I don't work, tried it but just not able to cope and lost job twice through disaplinary hearings. Although I would love to work, being at home means I can do more/have more energy to look after my children. When I worked it was just all too much and my body was tired from the going to work/admission every 4-6 weeks/going back to work too soon that it got to the stage when each attack was more threatening to my life....not worth it when you have a hubby and children to be here for :)

    Anyway, what was going to be a quick reply has turned into a saga-hope you don't mind but its so good to off load to someone who just gets you IYSWIM!!

    Thanks for listening x

    p.s. I hope you mean you take an omron neb with you and not a moron!!-why wouldn't you rely on this one-I was swaying more to this for my new purchase?

  • Hi fb sorry for delay!

    For me the Spiriva has helped to open up my small airways in my lungs. For a long time I felt I couldn't get air (or meds) down into the bottom third of my lungs but since being on spiriva (which is normally used for copd patients) I can get air qll the way down and expand my lungs fully.

    My peak flow went back up (at best, a very rare thing but it still happened) to what I had been a couple of years ago.

    Your last post btw was like reading my life and trying to work. Haven't been able to for a few months for the same reasons.

    X

  • Spirivia is the same as atrovent... its a muscle relaxant type of inahler good for bronchspasm's

    Im also on rotating antibiotics that somethimes helps people I rotate between amoxicillin, doxycyline and azithomycin.

  • hi again, FB,

    yes that should be Omron not moron, though i can have some of those out paddling with me, lol,

    i was origionally under the Brittle unit in Birmingham but that was 20 years ago, i did not live that way, in Eastbourne sussex in fact so it was a bit of a comute, i now go to Guys in London, and although Proff doesnt like the terbutaline, he allows me to get on with it.

    hope being able to talk to us all has helped,

    george xx

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