Hi, does anyone else here take Ralvar Elipta 92 inhaler AND have bronchiectasis please? It was suggested by my Res nurse specialist that I change my seratide for another more modern one. I had to see the asthma nurse at my surgery who felt this was the one I should have.
I must point out that I do not have asthma and I am not sure whether this is ok for what I do have, bronchiectasis?
The info says that a common side effect is pneumonia and as I have colonised pseudomonas this could be the end of me!
As you can guess I am afraid to start this new med.
Please let me know your experiences if you have the same condition that I have?
Aww please don't say that snooze..can be scary at times as I said in an earlier post in 2013 after catching pseudomonas and 10 days on ventilator I was also found to have bronchiectasis,I've always had asthma..I totally understand the fear and frustration you must be feeling,I'm on the 5th box of 10 of steroids at the moment 😏I have Seritide 500 spirivalue capsules and salbutamol inhaler but the inhaler you've mentioned is new to me must ask about it..please keep engaging with the people on here soooz their good guys and gals,just knock there's always one of us at home..chin up? Ger
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Thanks Ger, I Know there are many on here who have bronch and pseudo. It is helpful to share experiences.
It just does not make sense to have an inhaler to help prevent flare ups that gives pneumonia as a common side effect??
This is a tricky one sooz. All of the literature states that bronchiectasis without asthma should not be treated with steroids by inhaler or orally and that the inhalers make no difference. The pneumonia risk applies to copd but doesn’t seem to have been adressed in bronch. My bronch expert for years who is now retired always used to say that I did not need it. I have been colonised with pseudomonas since 1986.
11 years ago, following a period when I kept getting anaerobic bugs a registrar put me on Fostair which is a combination inhaler. I have always hated the fact that it makes me bruise. Last month my now bronch expert ( for 15 years) said ‘why are we treating you for asthma when you have only ever been diagnosed with bronchiectasis’ HO HUM!
I decided to come off it so weaned myself off over 3 weeks. One week off totally and I was finding it impossible to get mucus out or breathe. So yesterday I took the Fostair as I was desperate. Within 2 hours I was back to my normal self.
If I was you I would not rely on the respiratory nurse because they are trained in copd and not bronchiectasis and often do not realise that they need very different treatment. She probably knows her inhalers though but only as they apply to copd. However, going on my experience one of these inhalers may be useful to you, in spite of the literature. I think advice from your bronchiectasis specialist is called for.
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Thank you greatly for sharing your experiences Littlepom. I have never felt that inhakers have much affect on me but I have had seratide for a good many years now. I am worried at the new inhaler being a fine powder too. There are too many nooks and crannies for powder to sit or possibly coagulate?
I think I will take your advice to speak to my bronch nurse specialist on the phone tomorrow and see what they think. I think I would rather try fostair as it is not powder I believe.
There's more than one kind of Fostair inhaler I think (different strengths and different kinds) so if you're wanting to avoid a powder one you'd need to check you're getting the one you want. If you're able to ask for the one you want? Hopefully you can choose one that suits you.
I have bronchiectasis and obliterative bronchiolitis and am colonised with pseudomonas but not asthma. I take QVAR which is an asthma inhaler really and find it excellent. It was prescribed by my consultant who is a bronchiectasis expert.
Hello Carnival, thanks for your reply. I have looked it up and yes it is an asthma inhaler but then so is the sera tide that I have been on for years so I could ask about it.
The thing is I do not have asthma. It was misdiagnosed many years ago and I thought that steroids were not needed for bronchiectasis unless you have asthma as well? The mind boggles!
Hi my husband started taking this and he seems to be OK with it he was diagnosed with copd a year ago now I've seen you say about common side effect im worried
Hi Outdoors, if your husband has been ok sorry that I may have frightened you. Not everyone gets all or any of the side effects of course, the main thing is that he gets benefit from using it.
My query is that it is for asthma and COPD. Bronchiectasis is not mentioned in the details.
Hi,I have Bronchiectasis apparently brought on by Rheumatoid arthritis which a lot of people don't realise affects not just your joints but your organs.Anyway,I've been on Relvar elipta (once a day) given to me in place of a serotide inhaler for about 18 months now.For me personally I feel this hasn't really helped at all.My breathing has declined,things that were effortless now get me breathless but that may be my lung condition and everyone's is different.Having persisted with GPs,consultants etc I am now being changed to incruse elipta.Relvar may be brilliant for yourself but unfortunately I feel it has been irrelevant for myself.I'm 46,in fairly good shape but have an FEV of around 42%.This is frustrating and my understanding of Bronchiectasis is that the damage to the airways is irreversible so it does cause me concern but I guess we all have to manage our ailments.Hope it improves your condition and if you like tell me more about your Bronchiectasis.Craig.
Hello Craig, I was amazed to hear that you have bronchiectasis from rheumatoid arthritis. These conditions are a trial but the way I look at it is that 'it is what it is' so just make the best of it. However, it can't be easy for you!
I have had bronch since early childhood but not formally diagnosed until about 17 years ago. However, Pseudomonas only set in about 18 months ago following quite a significant bleed in my lungs.
I had the aggressive antibiotic treatment , Colomicin by IV twice daily and ciprofloxin 2 x daily for two weeks, then further oral anti bots for 3 months. It did not eliminate the pseudo so it is here to stay.
I therefore have the nebulised regime, ventolin followed by hypertonic saline followed by gentamicin twice daily.
I do the usual clearing huffing, take azithromicin 3 x week, carbocystiene 6 per day and the steroid inhaler which has just been changed. I have yet to start that!!
All of this has kept me stable for the past year or so. No flare ups but i have limited breath and therefore mobility.
I don't know if any of this bears any similarity to your condition but I will say that you should do the huffing all the time to try and avoid pseudomonas ever making it's home in your lungs. It seldom disappears and the medication regime is for life
Thanks for taking an interest, it is a lonely condition that even the GP's generally do not know much about.
I agree,appears that GPs are limited in their knowledge and diagnosis.I was told I had asthma for years but my own gut instinct told me otherwise as I know people with asthma and their symptoms were different to mine.I had to keep pushing for second opinions.Hope your Relvar improves your condition.
Seems to be a trend - bronchiectasis sufferers without an asthma history but taking an inhaler that was developed for asthma. I'm on one of those - Symbicort (the weakest version, I think; 160/4.5). it was prescribed for me at an early stage by a Thai pulmonologist before I had been diagnosed with bronchX but was suffering infections and some bronchspasm. My UK consultants (Papworth Hospital) who finally alighted on bronchX have never quibbled with me taking it, whereas another generalist Thai pulmonologist reviewing my case recently said I could/(should?) come off it.
I find it helpful so I've stuck with it. I halve the dose when things are going well (maybe 75% of the time these days) and never worry too much if I forget to take a dose. So far so good - I don't seem to have problems/side effects with steroids
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