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Using Symbicort .... or not? You people who know ... advise me please

20 Replies

Hi

I have been reading posts here for a while (recently including some recent ones that actually old ones apparently..... v informative, but rather confusing)

However, I have been prescribed Symbicort x2 daily .... I have not been using it.

I have moderate emphy and almost no bronchitis (ie no cough), as far as I can see on the 'interweb', Symbicort is for the purpose of reducing exacerbations, and as (touch wood) I have yet to have anything like an infection for three years, I have chosen not to use my inhalers.

Feel OK mostly with odd days of breathlessness

Am I making a mistake?? I have a gut feeling about medication which is use as less as you can

Regards

Rips xx

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20 Replies
Toci profile image
Toci

Are you my twin? I feel exactly the same and always take the minimum. I also do not use either symbicort or seretide because they are to reduce exacerbations (which I do not have - touch wood) and I believe they also help with reducing mucous(?), which I again do not have. It is one of the reasons I object to the term COPD when bronchitis is so different to emphysema. I do use a longer lasting (24hr) inhaler as I feel my breathing is much better with it. However, I cannot advise you on what to/not to take. It is something you need to take up with your docs.

in reply toToci

Thanks for this Toci ... twins under the skin!

What inhaler do you use?

I have also been given the blue 'asthma' inhaler ... quite why when all tests show I didn't have asthma I don't know .... also haven't used it ... should I? in your opinion ... do you?

Would welcome your views

Thanks

Rips x

Toci profile image
Toci

I should have added that many on here do use the various inhalers and are pleased with them. I was only giving my view. x

in reply toToci

It's only 'views' I'm after Toci

Just looking for people who do or do not do what I do and for voices of experience, not looking for GP advise ... just personal experience .... GPs are the voice of the NHS best practise, which does not always suit all ... just looking for the experience of others in our position

Rips xx ....

Toci profile image
Toci in reply to

I have sent you a message.

Hi.

I am moderate emphysema, diagnosed 5 years ago as mild, diagnosed 3 years ago as moderate, tried taking no medication for 3 months, ended up on prednisolone, won't hurry to do that again. Now taking Clenil Modulite, Salbutamol and Spiriva, asked nurse if I could cut down Clenil Modulite to once a day, she has agreed but every since then the humidity has been high in the south east and set to rise again on Thursday, so think I will leave it until the weather settles down a bit. I go to the gym 3 times a week, I am a great believer in exercise making breathing easier. Hope this is helpful

Peta

in reply to

Thanks slade

I know exercise is key to lung health and all health probably, not as a cure but as an 'improver'

At the moment my arthritis (hip) is making going to the gym a very painful concept .. have more appointments with physio and will work up to it. Recent high humidity has made me feel more breathless too ...... why should that be??? Anyone know?

Rips xx

scrobbitty profile image
scrobbitty in reply to

Hi Rips - it's because the air is full of moisture, so oxygen is less so therefore more breathless - strange because a lot of folk like the shower or inhaling steam - I hate the humidity personally. :) xx

in reply toscrobbitty

thanks scobitty

makes sense, tho like you say, there are sites that recommend breathing in steam

Could it be air pressure?

Rips x

scrobbitty profile image
scrobbitty in reply to

Could be a combination of the two - but everyone is different with how they cope with the weather, i.e. hot or cold; steam or not steam - you will eventually work out which works for you the best - that bit takes time unfortunately. :) xx

scrobbitty profile image
scrobbitty

I'm kind of with you on the take medicines only when absolutely have to because of the side effects and the general fact that is something unnatural being put into the body - however, and a big however from me, because my breathing is so rubbish, I now use everything they give me. I'm on Symbicort and I find it works immediately to open up the airways so from that point of view, I'll take it! :) xx

Hi Riply I am on symbicort and have been for a few years. As far as I understand it it is to help open the airways. It's supposed to keep them open for up to 12 hours. I find it very good. Because they have a bit of steriods in them I have been told not to take more than 8 puffs (100 symbicort) a day.

Bev x

in reply to

Thanks Bev, Peta, scrobitty and Toci , I have decided to see the respiratory nurse and get my lung function checked up .... I feel OK so hopefully the numbers will not be too bad. Will find out on Thursday. Will discuss Symbicort with her...... thank for the advice everyone..... fantastic site!

richardcrossroads profile image
richardcrossroads in reply to

good evening Ripley

when I was first given symbacort it was the 200/12 version and I was told two puffs morning and night so I did as I was told 12 months on I had bruising down my arms and so took a look on the net, and went down to the low dose, one twice a day I then used it as went needed I never got off it but down to just on puff, this was in 05 since then I have used it when needed but I am not sure if it is needed because of the other things going on,

one point is that steroids break down you immune system and so what you are doing is the way to go, and those telling us what to do do not have COPD, and it all comes from a book,

we as sufferers have a vast amount of knowledge which this site can pass on,

my view is do what you find works but tell people, I am at the moment going through a new phase of what I think could be anxiety and depression, GP's have no idea as to what to do and no intension of referral.

we are on our own as each of us are different but we have a lot to pass on

all the best Richard

in reply torichardcrossroads

Thank you Richard,

The effect that steroids have on the immune system is something I am only too aware of .... my mother was on steroids due to adverse reaction to statins, and was on major painkillers due to fractured vertebra due to osteoporosis (again exacerbated by steroids) ..... she contracted a kidney infection, painkillers masked symptoms and depressed immune system meant she died of undiagnosed septicaemia (her white blood cell count did not rise so no infection diagnosed), due to kidney infection. So obviously I regard both steroids and for that matter statins as something to avoid if at all poss.

I may have to take them sometime .... but sure as #### .... not yet!

I am sorry to hear of your anxiety and depression .... I have suffered from both, mainly anxiety, for many years (tho now doing quite well). I am allergic to the SSRI pills, and have had at times to just try and soldier on ..... v diff ..... you have my sincerest sympathies.

Im surprised your GPs do not prescribe something for this .... I know mine are only too happy (indeed TOO happy) to prescribe a pill for all occasions. Have you asked for counselling, it is available thro NHS tho there is a big waiting list. I was offered it once, about 18 years ago.

Take care

Rips (Beth)

richardcrossroads profile image
richardcrossroads in reply to

good morning I do believe you will have to use steroids in time, but I do agree to keep fit and well without is the best,

I did go through counselling that is how I can now identify what I have, but I find GP's to ready to give tranx etc, and from what I understand most have an effect on your breathing, I do have some to take occasionally lorazepam, but prefer to work through it

have a good day

Richard

dukes profile image
dukes

I've been on Symbicort for about 7 years now and the only adverse effect is that I now bruise very easily which the consultant said that it caused.

I try to restrict more the use of antibiotics to only severe symptoms as I do not want them to become ineffective, and I don't like the side effects that I get from steroids either so I treat them the same way!

libby7827 profile image
libby7827

Symbicort is a "preventer" medication, not a reliever. It's main purpose is to relax the muscles in the airways to make breathing easier and inhaled steroids are nowhere near as ;powerful as ingested steroids. I certainly couldn't manage without Symbicort, it's the one I find seems to do the most of the good out of the array of other meds I am prescribed for emphysema, If you've found you don't need it the not much point in taking it but you don't mention what strength your symbictor is, your condition is and how severe you are, so my advice would be to speak to your consultant about it. Libby

in reply tolibby7827

Hi Libby

As it happens I have had my annual review today, spirometry etc. I am 'moderate' COPD, primarily emph, very little/no cough/mucus..... diagnosed three years ago. I told the practise nurse I wasn't using the Symbicort, which is pretty obvious from my notes (lack of repeat prescriptions), she said this was OK as long as I was clear of infections (which I haven't had yet .... touch wood), and that I should use the ventolin if I got v short of breath. To be honest I expected to be told off, so it was quite a relief, Plus my lung function has improved since last year, when it showed a big drop, and isn't too much worse from when I was diagnosed. I never really understand the figures .... I think FEV1 74 and a ratio (or something??) of 67. No idea what this means to be honest, but she seemed happy.

I know I am very lucky at present, some v poorly people here

Thanks for your interest

Beth (Ripley)

glesgajohn profile image
glesgajohn

Hi i have a few inhalers bu at the moment Symbicort is the only one i feel i get the benefits from , as for using it or not using it , i think the Doc gave u it because he thinks u need it even if u dont , but like u when i feel good i tend to stop taking some inhalers , whether this contributes to me feeling worse as time goes by i think it does

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