getting worse, and what next?

hello everyone,

went to the asthma nurse today as I had a rough night with my breathing last night. she said how exhausted i looked (nice!) and asked how it had been since my review last month - i've had two attacks, which is two more than the last year! she gave me a course of steroids for a week, which she hopes will settle it down for now.

she did say, though, that she didn't really know where to go next with my treatment if things don't settle. I've been on Seretide 500 for the last 10 months or so, and Montelukast at night (then just salbutamol reliever). I felt quite uncomfortable at that, as my asthma has been gradually worsening for the past year and seems not to have reached a slowing down point. when I was younger I was permanently attached to a nebuliser, so I am worried that after 10+ years of being fine that it might get to that stage again.

what is the next stage? it isn't that I don't trust my asthma nurse, I just don't know what to do.

all best,

natalie

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If you are getting to the stage where your options with you GP asthma nurse is limited. I would start seeing your GP, as he has a few more options he could try. If necessaary he can then arrange for you to see a consultant. I hope you have a restful day and the asthma behaves....

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hi natalie

sorry u feel disheartened by ur asthma nurse, please dont be, there are many options that maybe tried...

surely ur GP should be referring you to a cons if he hasnt already done so, at least before he or your asthma nurse says they dont know what the next stage of treatment is?!

maybe suggest this to your GP

good luck, dont lose hope just yet

xx

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natalie, i'm in the same position as you and on montelukast and the equivilent to the high dose seretide you are on. i've requested Atrovent and nurse said ok and i'm trying that for few months if not then a referral .

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Seems like there's several of us at a similar level of medication.I've been on several courses steroids this year and a lot of antibiotics for sinusitis (now waiting FESS op). Malawi2, find my asthma nurse is better than GPs as more specialist/area of interest. There is options as woody-som said atrovent which I hadn't known or I'm going to ask about theophylline. Seems to be a recurring theme to be told don't really know where to go next/on maximum levels medication.

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Thanks everyone, it's great to feel I am not alone in this situation it does seem common that they reach a point where they just don't know what to do with you.

TJ - the asthma nurse (who I have a great relationship with) is the only person I am allowed to see at my GP! Which is strange but it does mean that I feel she is actually bothered about my general health. Sad to hear you've had so many issues with sinusitis - I have had it once and the pain was awful. The nurse said to me I might have a chest infection (which would be my 4th this year) and I should go back tomorrow if the steroids aren't making vast improvement. So I can only wait and see!

Thanks also for helpful suggestions of next steps, I'll be sure to ask next time I go if there is no improvement.

Natalie xxx

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TJ, if you've exhausted all other options and have been refered then theophylline may be an option but at primary care level that's not prescribed. Most GP's only know the basics and prescribe a few set drugs, what you need to do and this applies to Natalie as well is do the research yourself and if you have a good relationship with your asthma nurse then suggest an alternative or an add-on and if you have the research to back it up then you'll be surprised what they'll do. Both my GP and asthma nurse know i do that and can put a good argument up and I get what I ask for.

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Thanks Natalie & Woody-som, I'm trying to figure out what the options are (currently on Seretide Accuhaler 500 x 2 daily, spacer + ventolin which takes a while & quite a few puffs to help, singulair/montelukast, several short courses prednisolone, fexofenadine 180, nasal/sinus rinse, Nasonex steroid nasal spray for sinusitis-finished antibiotics & waiting CT scan & FESS op). Have a feeling asthma nurse'll suggest starting pred (again, grr) I have at home which was given by GP to start at peak flow 200 or if max dose seretide not helping. Have been told referral for asthma if sinus op doesn't help settle asthma as one/linked airway problems.

I feel I need something to keep me off pred and away from docs every few weeks. Why do you say 'theophylline may be an option but at primary care level that's not prescribed'? Have you been referred or have a good GP/asthma nurse that prescribe more than the basics? Am having a look at what's possible.

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P.S. let me know if you find anything useful, have some medical journal access which can be handy

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After I saw this New Zealand farmer on deaths door cured of leukemia through high doses of vitamin C I decided I had nothing to loose since I was diagnosed with late adult onset asthma 21/2 years earlier. That evening I took 10 grams (10,000ml) to start. About 4 hours later I went to bed and noticed I didn’t have to take my blue inhaler. The next day I decided to increase my daily dose to my tolerance level getting as high as 30 grams a day but eventually not being able to take more than 22 grams a day which is my tolerance level. All I can say is that it’s been 6 months and my asthma is just about gone. I still take one puff of symbicourt a day and I will eventually start to reduce it. I rarely have any congestion and when I do it’s mild and goes away by itself after ½ an hour or so.

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'theophylline is outside of primary care remit for presciptions, hence referral.

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I am in the exact position you are - 500 x 2 Seretide, just completed a course of pred (but not feeling massively better and still using loads of salbutamol) and have been referred to the asthma clinic at my local hospital. I hate being on pred and I was only on Seretide 125 until a year ago when things flared up and have never settled down again. It's really frustrating isn't it! I can imagine you're not a happy bunny at all at the moment (I'm certainly not)

Are you keeping an asthma diary of your symptoms? I have started to do this to try to identify any triggers I might have missed.

I'd advise you ask for a referral to a consultant. Apparently there are other medication options before trying theophillines (which as far as I understand are very much a last resort) and maybe there are some lifestyle changes you might be able to make too.

Take care!