TRELEGY 30 DAY INHALER

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Been a bit bad for last 3 months with my breathing, when i go to the doctors it so annoys me when they put the thing on your finger and say Your oxygen level is good, No its Not i can hardly breathe. After a few visits was given the trelegy inhaler which has a steriod in it, not so sure about it was told it should help but expected more really,has anyone else tried it?Now i have also got CBD Oil as well so any veiws on that?

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15 Replies

  • Posted

    Hi Margaret

    Firstly my sympathies, we have all been through what you are going through so you are not alone. The expertise and professionalism amongst general practitioners varies. It is important you get an expert opinion by a specialist who should typically give you a full lung function test and possible a chest xray and CT Scan. After this series of test a proper diagnosis can be made.

    For myself I have suffered for nineteen years and I'm still around! I have tried many drugs including Trelegy (I could not feel any benefit so returned to Symbicort 400 and Stiolto. Which whilst by no means a cure gives me some benefit in my breathing.

    There is a lot more that can be said on the subject. There is so much useful infomation available on the internet, but you need to be selective and only use the best sources such a the Mayo Clinic, The British Lung Foundation and its US counterpart.

    Good luck with your research.

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  • Posted

    I was so pleased when I read your post! (sorry about that) I was moved to TRELOGY about 2 months ago and I have to say my breathing is much worse, before I was on Spiriva and butesemol (or something like that) Unfortunately I am away from home for another 2 months so will have to struggle on, life is not easy at the moment. I have never been referred to a specialist at the hospital or had a full range of tests. I was diagnosed over 10 years with COPD and according to the nurse practitioner I have severe COPD

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  • Posted

    Hi Margaret

    Is this Scotswoman Margaret? Hadn't heard from you in a while and i hoped that meant you felt better.

    Have you been on the Trelegy the full 3 months? If so, you've given it more than enough time to work so you'll want to report back to the nurse/doc this week & ask for a different kind of inhaler. If you've only been on it for a week, you might want to stick with it a bit longer. Some of the steroid inhalers need to build up in our system for 2-3 weeks before they are fully effective.

    i hope you get some relief soon.

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  • Posted

    Hi Margaret I have had alot of different inhalors to I attend the respitory clinic at the hospital about 3-4 times ayear since I had pneumonia I used to take acourse of steroids most months plus my other pills Seven months ago the consultant changed my inhalor to trimbow but when i take it he told me to empty my lungs and take a quick sharp intake as hard asi can and hold and do it another twice before i take the next inhale He also said that is how i want you to use the inhalor and dont listen to anyone that tells you different This has been a game changer for me and although i still take pills daily I have not had steroids for7 months which i could bever see happening I know the same meds dont do everyone but it might be good if your gp refdered you to a clinic or consultant All the best PS I am in scotland

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    • Posted

      James, I'm not sure i understand about the exhale/inhale routine. Do you do that 3 times and then take the med? Or do you take it after the 1st exhale/inhale?

      And everybody, always do your vigorous rinse and spit immediately after using steroid inhalers, to help cut your chances of getting thrush. May benefit your teeth, too.

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    • Posted

      I the spacer in my mouth and exhale as much i can Then i press the inhalor and brearh in as much and as quick as i can and hold for 3-4 seconds exhale into spacer again then breath in quickly again without pressing inhalor and exhale again do it again and repeat for the rest of your dose I use an earochamber

      Hope this answers question

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    • Posted

      Yes, James, now i understand. Not all inhalers should be done this way. My pulmonologist makes us demonstrate how we use our inhalers. I aced my Combivent and Advair (where exhaling into mouthpiece blows away the dose completely, as does tilting the gizmo), but was not rigorous enough in my demo of mouth rinsing post-Advair. Doc himself demonstrated a full- mouth rigorous rinse/gargle/spit, lol, tho w/o the water. Same doc makes me show him the Combivent from my purse every time so he can check the dates for when i started that canister & when it expires. Last month he ragged on me for admitting that i more often use a Combiv that i keep in a shady spot in my car. "Too hot, ruins it. Your car in your garage can still get to 120°F."

      He's an arrogant character whom i wish both Himself & I had found 20 years ago because of the demos and the checking every aspect of our lungs & meds.

      Sounds like you've got someone equally conscientious & knowledgeable.

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  • Posted

    you really need to be under the care of a pulmonologist if you have COPD . did you ever actually get a diagnosis for COPD ? Have you had any test done ? I recently asked my pulmonologist why I can have a normal oxygen saturation reading when I feel like I'm struggling to breathe. he explained to me that it measures the oxygen in the blood that flows closest to the skin. fortunately for me my pulmonologist does not put a lot of weight on those oximeter. in fact his nurse told me that she has seen patients who have normal readings and she knows they have water on their lungs. I think using an oximeter to judge how much oxygen is in your blood is akin to asking someone in pain to rate their pain. It's very subjective. And the meter isn't any better.

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    • Posted

      We had one pulmonologist in town who made all ambulatory patients do a walking oximeter. Some of those "walks" down the hall were mighty slow, with patients hanging onto the nurse with one arm and the wall rail with the other. It is a much better measure, if docs refuse to do the old fashioned, very tricky, very painful blood gas nightmare punctures.

      Himself used that pulmo until i had to say that i could not drive 70-80 miles just to get him to-from that doc. Didn't have cruise control then.

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    • Posted

      I have no idea what happened to the rest of my message so I'm going to start again ...

      I was in ICU in February . While there they did two blood gas tests. And boy do they hurt? I am ambulatory enough for the walk test. and that's what I do when I'm at my pulmonologist.

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  • Posted

    I forgot to mention since it sounds like you're new to inhalers make sure you rinse your mouth very well every time you use a steroid inhaler. you can get thrush by not rinsing well.

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    • Posted

      Thanks i forgot about that sure i read it to. No i just go to my Doctors surgery once a year to get checked out or if i need to i make appointment with the nurse there as i am told to. I had a 30 day inhaler before but not one with a steroid, i got that inhaler as had not been getting better with my course of Antibiotics and Steroids, was doing nothing at all for me so they tried that. In 2016 i was 78% i now am 59% If it goes down this quick i am scared.

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    • Posted

      hi again margaret If your maybe not on the right meds for you ayear between visits is a long time Maybe your nurse could ask your gp if he could refer you to respitory consultant Its maybe time you seen one to find out what would suit you best

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