I’ve been on lansoparazole for 5 1/2 years , initially due to a strange reaction post antibiotics but I also found that my throat was a lot better ( silent reflux).
However, I also have IBS and am concerned that this maybe getting worse due to my gut microbiome having been affected by the lansoparazole.
Having scaled down to every other day I have now stopped lansoparazole a week ago. My throat, voice is awful ( with some heartburn). I do realise that you can get rebound acid when stopping lansoparazole. I’m concerned though that it may ultimately have an effect on my lungs.
I know this is a question for a respiratory consultant but I’ve not got an appointment yet. I’ve lost faith in GPs due to all sorts of reasons especially Bronchiectasis!
I’d love to know if anyone has been told that it’s a good idea to take reflux drugs as a precaution to protect Bronchiectasis getting worse?
Thank you xx
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winter2013
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Hi winter. Both my lung consultants (local & Brompton) say it’s absolutely essential to suppress heartburn & prevent stomach acid being breathed in. They’re very hot on this. Apparently it’s as corrosive as battery acid & hence very damaging to the lungs. Also you run the risk of Barrett’s Oesophagus, which can lead to cancer.
I’d love to get off PPIs as I know all the drawbacks, but I can’t risk more lung damage. I take probiotics and prebiotics to try & improve my gut biome (good idea anyway for those of us who live on antibiotics). Perhaps you could try those if you don’t take them already?
Thank you so much for your kind reply and taking the time!!I don’t get on too well with probiotics but to have live yogurt. Reading what you’ve said I think I’d better return to lansoprazole as even if it’s acid rebound due to stopping I don’t think it’s worth the risk with my precious lungs!! Xx
Thanks Hanne!! I needed to hear this as trust people on here more than GPs ! I’ve experimented and it’s not worked so lansoprazole packet out again!! I do appreciate you replying xxx
Ps just read your profile and posts and see you were in Royal Brompton at Xmas !! Do hope you’ve recovered from that episode , although I know recovery is a “ tricky” word! I have seen a consultant there … Professor Wilson, although not for a long time , due to misdiagnosis, mismanagement etc etc locally . Ended up phoning asthma society on holiday and was told to referred there … what a difference ! Everything had been wrong… CT scans inaccurately read, antibiotics wrong, you name it. A long way for to go but worth it. Xx
Gosh, I do agree. I’d never rely on my local hospital, they’re no help at all. I’ll always find a way of getting to RBH if I possibly can. Why don’t you go there anymore? Your local doesn’t sound good… Prof W has virtually retired now & there some younger consultants (who I prefer.)
I’m struggling a bit now tbh, but then there’s a lot going on in my lungs! So I emailed the specialist nurse last week & a specialist reg phoned me back to discuss, & consultant is phoning next week. You really couldn’t ask for better care.
Great you’re getting such good care! I live in Devon and have been managing with the advice I’ve been given , then covid. Yes I’m planning on going there to see Prof Wilson. Oh dear I didn’t realised he had practically retired! Is it possible ( only if you don’t mind) giving me the name (s) of other equally good Bronchiectasis consultants there? . It’d be so helpful . I sound very spoilt saying this but due to distance etc it’s easier for me to go have appointments privately then follow up with the advice here . I actually ended up going to RB to see him as I was in such a mess ( very long story) I phoned the asthma society in tears. The nurse said to me what a mess I was in and told me to get to Royal Brompton!! Thanks again Hanne and good luck ! Xxx
I don’t mind at all. I’ll pm you later with a full & frank opinion of all the consultants I’ve seen at RBH 😆They’re all experts but some are more approachable than others x
Not got ncfb myself, and I’m sure more personally knowledge people with bronchiectasis will be along in due course, but I do have chronic reflux, and the advice is that uncontrolled acid is not a good idea for numerous reasons. From a lung perspective, the issue is aspiration of acid leading to lung damage and recurrent infections. Lungs aside, left untreated it also damages the oesophagus and raises the risk of oesophageal cancer due to erosion over time. It can also cause issues with your larynx and potentially even your sinuses.
As far as I’m aware, reflux is only treated when present regardless of underlying diagnoses, it’s not usually something the they medicate for ‘just in case’ in bronchiectasis or any other disease, partly because long term use of PPIs (like lansoprazole and omeprazole) is not without potential issues. But if you have persistent acid reflux, then it’s very important to manage it regardless of what other health problems you may or may not have, to ensure it doesn’t cause additional medical problems. If the concern you have is gut flora, have you looked into things like acidophilus supplements? I’m not one for supplements and alternative medicine generally, but there has been quite a lot of research done into certain probiotics now to rebalance the gut.
Thank you so much for taking the time to reply!!! Very kind . Yes I’m aware of probiotics but don’t get on too well with them but do have live yogurt . Think I probably can’t risk not taking lansoprazole as maybe what I’ve got is more than acid rebound. Thank you again xx
Hi, I have just read your post and the excellent advice given. I suffer with bronchiectasis too and my original consultant put me on Omaprazole explaining how acid reflux or silent reflux can cause much damage to the lungs and needed to be controlled with medication. Some years later a new young GP suggested I decrease the dose as Omaprazole/similar medication have some side effects including osteoporosis. As I was on 20mg daily I agreed to decrease the dose to 10mg. After being on Omaprazole for over 5 years I found it extremely difficult to do but with advice I did it very slowly over three months. I'm fine now I'm glad to say. You don't mention what strength lanzoperole you are taking. Maybe you could dicuss the possibility of just decreasing the dose with your consultant when you see him/her, if thats advisable of course.Best of luck. Please let us know how you get on.
Thank you so much for taking the time to reply , vey kind. I was on lansoprazole 30 for a long time but 2 years ago decreased to 15. I phoned the GP expressing my concerns re taking a PPI drug, and she said “ we all need stomach acid” and told me to take it every other day for 2 weeks ( still got symptoms) then stop , which I did a week ago. I’ve decided to go back on it until i can speak to my respiratory consultant ( not sure when that will be) but suspect he will say different to GP. It’d be great to have conditions where advice is consistent !! As well as Bronchiectasis and IBS , I have ME/ CFS which is even less understood ! Still when you consider the health care of parts of the world im lucky ! Xx
Hi winter2013, I have/had ME/CFS which a few years ago a new consultant said was definitely Fibromyalgia, NOT ME. Also plagued by IBS too. Last May a CT scan showed Bronchiectasis, so we are quite similar! Acid reflux has crept up on me in recurrent bouts for a few years now. One GP says I must take a low dose of PPI daily, another says it doesn't matter, and my chest consultant never mentioned it.........no wonder we are confused. I have recently been referred back to Gastroenterologist and booked in for an upper GI endoscopy this coming Thursday. Hopefully that will help in getting some answers. My cough is less annoying when I am on Omeprazole 10mg, so I think that sort of proves the point!😀 I am on regular annual infusion treatment for osteoporosis, so my bones are protected.
Hi captaincoughYes we do have similar conditions! Unusual to find someone with all my ailments!! Also frustratingly they are all either not that common and theres not enough knowledge/ conflicting views on how to treat. Could write a thesis on my experiences with misdiagnosis, inaccurate advice!!
Anyway good luck with your endoscopy on Thursday. I get a cough , throat problems with reflux which I feel means it’s LPR ( silent reflux) but not sure GPs distinguish between different types of reflux.
I guess in the end we have to do what instinctly seems right having got as much info from the various people, sources.
I always say …when you’re at your weakest you have to be your strongest… which isn’t easy.
Also hate to be seen as fussing ( both by medics and others) who don’t fully understand you’re dealing with conditions where knowledge isn’t great. I’m referring especially to IBS ( you use the word “ plagued and I totally agree here!!) and ME/CFS!
It’s so helpful to hear everyone’s different experiences though and to nice to “ meet” someone who has the same conditions as me!! Never come across someone with Bronchiectasis, IBS , reflux and ME related condition. So good to “ talk!”
Hi winterI have bronchiectasis too (and a hiatal hernia 😪) and the respiratory consultant told me I have to take PPI permanently to prevent further lung damage. I’ve tried omeprazole and then lansoprazole but seem to have a bad reaction to them when taken for more than a few weeks - heartburn day and night. I tried cutting down to every other day and then last weekend stopped completely. Things improved in that the daytime acid discomfort stopped but I still get it at night. I use a wedge pillow, have cut out trigger foods and use gaviscon to try to control it. I have an appointment with the respiratory consultant in a couple of weeks- I’m really hoping he’ll have some suggestions as I worry about lung damage and silent reflux but find it hard to cope with the PPI side effects! Hope you start to feel better soon x💐
So much good advice. My husband has silent reflux and takes esomeprazole now but has been taking ppi's for many years including omeprazole and lansaprazole. He had a lung transplant in June last year because he developed IPF and the consultant said that silent reflux was probably a contributing factor but also he was diagnosed with sarcoidosis 30 years ago which he appeared to have recovered from. The only downside in his case of long term use is also that he has a B12 deficiency and anaemic on and off. Having to use Ppi's is a necessity for a lot of people but sometimes the side effects can cause other issues. On balance Ppi's are very good for reflux problems and as long as your B12 levels are maintained there should be no problem. Are your B12 levels checked regularly?
Thanks for replying Biofreak. Am so delighted by all the replies I’ve had but hope others will benefit too.No I’ve not had my B12 levels checked but I do take a high strength supplement.. in case.
It seems that respiratory consultants usually say take PPIs but GPs are wary .
I find this is the problem with all my conditions that whoever you see , understandbly, sees it from their specialty.
GPs are the ones who should be seeing the whole person taking into account all the conditions, pros/ cons , but due to lots of reasons this isn’t often the case.
Thanks winter. One thing my husband discovered was that , whilst protecting your gut from reflux, the Ppi's stop your gut from absorbing some of the nutrients from your food as well which can cause the B12 deficiency as well as other vitamin deficiencies. Supplements in tablet form didn't increase his levels so he had to have regular 3 monthly injections of B12. The GP for some reason didn't recognise this and was, at first, reluctant to do the injections until a letter was sent from his consultant with an instruction to do it. His levels are now monitored at the transplant clinic.
Thanks for reply firefly!Seems like you’re not sure what you’re doing either. Sorry the lansoprazole or omeprazole didn’t work but at least you’ve found other better methods than PPIs for the daytime. I too have tried the “ non reflux “ foods, gaviscon advance but for me not as effective as PPIs but I may not have been vigilant with it for a long enough period.
If you can, I’d love to hear what the respiratory consultant says at your next appointment about your silent reflux !
Good luck to you and hope you soon feel better and get best advice for you xx
This is definitely one for your doctor. I would advise not stopping any medication until you have had a consultation. Many people (including myself) are on Lanzoprozole for the rest of our lives. If I were to stop , I know I would get very bad reflux because my medication is quite toxic, that would in turn cause my lungs irritation and eventual damage and I only have one lung that is in fairly good working order. Again, you must get advice.
Thanks Caspiana for replying.I did speak to GP on phone , explained about Bronchiectasis, also concerned about long term PPIs effect on gut, IBS. Her reply was …… we need stomach acid, should t be taking them long term unless you’ve got Barrett’s Oesphagus… she then suggested I took lansoprazole every other day for 2 weeks then stopped.
On reflection and with what I’ve read, I realise this wasn’t good advice. The symptoms came back with every other day and are really bad now I’m off.
I should at best be stepping down extremely gradually ( miss one every day 4 days and if symptoms ok then gradual decrease over months) but probably I shouldnt even do that.
I have lost faith in GPs for chronic conditions hence am fact gathering.
Hope you’re ok as know from previous posts that you’ve been through so much!!! Yet you seem strong and a survivor!! Xx
I understand that if acid from your stomach gets up your oesophagus, then down into your lungs, it can be the cause of bronchiectasis. I believe mine was caused by an 8 month on and off lungs infection by Staphilloccus Aureus. Sorted by an IV antibiotic.I also believe you can keep acid reflux under control with Gaviscon. Talk to your GP,
Hi. I take omeprazole, quite a high dose, every morning an hour before food. I'd suffered indigestion for years, put up with it, (busy life then,) but didn't have it investigated for fear of the procedure required. This resulted in my developing Barratt's Osophagus as I had a hiatus hernia. I now need this checking via endoscope every 2 years, as a good portion of my osophagus has become pre cancerous. I realise need the PPI medication, without it I am in pain from acid reflux. I suspect the bouts of violent coughing i experienced over many years, plus the postural lung drainage could have led to the hiatus hernia. I can't offer advice but only my experience.
Thank you picking flowers for your replyYou’ve had a difficult time and good luck. My friend has Barrett’s Oesophagus and is on an extremely high dose of PPI.
Yes I’ve thought that all the coughing , physio etc over years could’ve caused reflux as I read that there’s a high proportion of people with Bronchiectasis who have silent reflux in medical studies ( or the conclusions as they’re quite complicated!).
Am certainly back on lansoprazole after my experiment to decrease and hoping I soon get reflux under control .
Hello Winter, I read your story with interest. I had a heart bypass operation 8 years ago and the consultant put me on Lansoprazole while I was in hospital. When he discharged me he said 'You don't need that any more', but my GP promptly put me back on it. Every GP I've spoken to since has agreed I should be on it. I have quite a strong stomach- never have problems with indigestion , or, as far as I know, acid reflux. i think I must be one of those 'in case' patients who Charlie mentions. Concerned to read that Lansop can affect one's bones. If I get a chance I will talk to my GP about the pros and cons of taking it. Thank you for your post. xxx
morning,reading all your replies,im similar to a few ,was put on lansoprazole for GORD,however when i got diagnosed with bronchiectasis my respiratory consultant prescribed it twice a day as reflux can aggrevate lungs especially at night time ,i have now been reduced to once daily by them but like everyone else its for life.Hope you get sorted soon .
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