Hi All, please can I pick your brains and experience?
Recently been diagnosed with severe COPD and been prescribed the following meds:
Relvar 92 mcg
Aclidinium 322mg
I have taken for the past 4 days and apart from a splitting headache when I take them, which last for about an hour, I have had no real change in my symptoms. The best meds that I have had to date is salmol breath easy.
Anyone have any experience of these drugs?
At the moment am overweight and am trying very hard to change my lifestyle.
Thanks to you all, a great and helpful group of people.
Annie
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Hi Annie, I was prescribed Relvar a few months back, it didn't do anything to help my symptoms, in fact I started to get worse, and was taken off it. Hope you find something that helps very soon, best wishes, Xris
Thank you guys for your responses, Xris- I am of the opinion that I will give it a week and then ditch it if no good improvements.
Has anyone ever gone without meds and just soldiered on? I am hoping with healthy eating, weight loss and pulmonary rehab that things may improve naturally, what's the thoughts on this?
Thanks again to all you helpful people that have given me a boost in my new COPD life.
Annie I think Relvar is a new med. I was 'phoned by the pharmacist after a few days for my feed back. Which was negative apart from the neat packaging! I wouldn't dare to go without meds. I am in enough trouble with them
in reply to
Annie, the second half of my message disappeared! I went on to wish you luck but also to say in your position I would go back and see my doctor. Take care, Xris
Hi Annie welcome lovely to meet you.Sorry cant help as far as the Relva is concerned tis a newish one.
Well done you for starting positive changes in your life,Iam too.Please be very cautious when it comes to your meds though dont be to gung ho eh lol.You say your at the severe stage please be careful. By doing all what you are saying will definitely benefit your breathing and health in so many ways so keep it up forever and make it part of your way of living now.I had a bit of a tummy wasnt overweight but any fat was on my tummy ,I have lost some weight off my tum and this sure does help with my breathing and eating Im not feeling quite so suffocated once Ive eaten which is great ,is also better for the old ticker too.Wishing you well blessings Janexx
Hi Longlungs, why long lungs? I was told I had long lungs-what does this mean?
I have been mistreated/misdiagnosed by the GP for a few years now and have had the worst of medications, he even prescribed flutiform, unlicensed for COPD- which was great for a week then it ceased to be useful. So all in all the only meds that I actually have is salbutamol and now salmol breath easy. So, no real loss if I did not take meds as I have managed just fine without.
Hi Annie my lungs are very long they have lost their elasticity and stretched not a good thing.Having said that I did ask the radiographer if people can just have long lungs without disease,and indeed lungs do come in all sizes but generally its down to lung disease,Iam called longlungs by family now seems to have stuck heyho.
Sorry you seemed to have had so many problems with the docs and meds no fun and very frustrating,You takecare and keepwell blessings Janexx
Hello Annie and welcome to the mad house lol, interesting what you say about flutiform.I was advised at my last copd review to change from Seretide to flutiform as it is easier to take.It has not done me any favours and I,m going back to GP tomorrow to tell them so.It,s just a cost cutting exercise as far as I can see.I,m all for saving our NHS money but if it does,nt work it,s no use to me.Been trying to shift an infection so could have done without the hassle and I shall inform them of this in no uncertain terms.OK had my moan!Now get yourself a decent GP and on the right meds asap.I wish you the best of luck.I have very severe emphysema by the way.Regards D.
Hi Jane, how did you manage to lose the tummy weight? My GP says its a result of the steroids, but would love to get rid of it, i'm a bit of a chocoholic though!! Love Sheila Xx
Hi Sheila I wish I could say how but I dont really know exactly except to say that in general my habits have changed gradually.Smaller portions coz my lungs and tummy have dictated that,the horrible feeling of being too full made breathing so difficult my lungs take up so much room that when tum is fall it squashes the lungs! Im not nibbling really anymore either due to finances not buying crisps and choccy things at the moment,needing the pennies for gas and electric Plus Im doing my mindful movements.So all in all a little bit of all of that has made the difference with abit of worry thrown into the mix haha.But it has made a big difference to my breathing so am very happy about it.Steroids do tend to make us munch more I dont take them very often so I cant blame them myself,but people do plump up for sure.Bless you being a chocoholic I love choccy too mmm I'll probably put it all back on over xmas do like a sweetie or two and my daughter makes some lovely chocolate fudge and maple syrup fudge which is to die for,so I could be an oompa loompa my January .
So really sad as it feels ,less food more moving is the name of the game. Goodluck Sheila hope you manage to shift a little.Blessings to you keepwell Janexx
Thanks Jane, i was afraid your last paragraph is the way to go, but secretly hoped you had a magic pill or something!! Like you its small portions of healthy food all day, then pack my midnight feast to eat in bed, seems to slide down!! Oh well New Year Resolution. Love Sheila Xx
Hi Annie, i would'nt like to ditch my meds, 'though i don't feel any better by taking them! Leave that for the experts i suppose. All the other things you plan to do definitely will though. I take it you don't smoke? If you do thats a 1st to sort out! Remember COPD is not a death sentence, it is living in a different way, Love Sheila Xx
Hi Sheila, leaving it to the experts are what has got me here in the first place! in 2009 (after working for a health board) I developed a chest complaint and had a spirometry test which diagnosed initially pulmonary fibrosis, but this turned out to be a mistake (thank God) but nobody ever really took it further apart from a salbutamol inhaler. Despite telling my GP about my symptoms for a few years, and spirometry tests taken by a health assistant, the GP recently told me that the spirometry test were the same. Seen the consultant who said that had been a rapid decline since 2009 (not spotted by GP) Perhaps now you will understand why I cannot leave it to the professionals. No, I don't smoke.
I am inclined to believe in the saying 'physician heal thyself'. I want to live a full life but I have to subscribe to my instincts too and right now I want to be the Captain of my ship. BTW I was a nurse of old and have worked for many years for a PA to an NHS Medical Director, so I do not come at this lightly. (Could have reported the GP but the problem is with NHS that often the consultants and their speciality are not communicated to the GP surgeries, so the GP are often not aware of the current treatments)
But, I must thank you for your help and support Sheila.
Hi Annie, whoops you know what you are talking about then! I do think the truth could possibly be, not enough funds, knowledge research etc, available for COPD. Keep well Sheila Xx
You have hit the nail on the head- and one thing is for sure, the pharmaceutical companies are not worried about their finances! But trust me I am now on a mission with the disease and anything that I find out I will post to you all.
One interesting exercise would be for us all to get a costing of our meds per month/year and just see how much is spent on controlling our symptoms as opposed to finding a cure, after all if we were all cured where would the drug companies be? So, is it in their best interest to cure us?
Ive not long been diagnosed with copd does a soe mac work please someone let me know
o have copd and have never heard of those meds
if your not getting on with them you must speak with your gp or consultant
what inhalers are you on most of us are on symbicort and eklira or spiriva im on the first 2 and they work brilliant plus my ventolin really improve breathing plus other meds i have after these but the inhalers are great
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Janexx
Plus Im doing my mindful movements.So all in all a little bit of all of that has made the difference with abit of worry thrown into the mix haha.But it has made a big difference to my breathing so am very happy about it.Steroids do tend to make us munch more I dont take them very often so I cant blame them myself,but people do plump up for sure.Bless you being a chocoholic I love choccy too mmm 
I'll probably put it all back on over xmas do like a sweetie or two and my daughter makes some lovely chocolate fudge and maple syrup fudge which is to die for,so I could be an oompa loompa my January 
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