Hi Everybody, Firstly I pray for all of you good people to have rapid and good outcomes to whatever conditions you are struggling with.
I am in a bit of a dilemma and would really like to share it with you to get your thoughts on the subject.
From March- April 2018 I finished with steroids and TG have been free of any PMR symptoms, my PMR journey as far as I know lasted almost exactly 2 years. I had also been on a small maintenance dose of 15mg of a PPI (Lansoprazolel) after experiencing a gastric bleed suspected to be the result of taking ibuprofen when I got my initial aches and pains. (That stuff is dangerous)
I had taken the PPI for the whole 2 years I was on the steroids, the thinking being that it would protect my stomach somewhat from the steroids.
SO, when I finally came off the steroids I asked the GP if he thought it would be ok if I came off the Lansoprazolel. He said Yes that would be a good idea.I asked if I needed to taper my coming off, he told me that wasn’t necessary. ( have since been told by another doctor that it is NOT a good idea to suddenly stop taking the drug and that tapering is better)
Anyway after a few days and never having experienced any kind of acid reflux symptoms before, I suddenly started to experience some discomfort in my upper esophageal region, very mild indigestion, is how I would describe it, a little repeating, that sort of thing. I went back on the Lansoprazole and things did seem to improve. I must admit that
I had an on off relationship with the drug, as things improved I would try stopping. I have been in that cycle for a long time. I have also been trying Gaviscon.
However, this summer when all the hot dry weather started I developed what seemed like an upper respiratory infection where I was constantly having to shift something that was irritating my upper chest, also tightening in the evenings accompanied by wheezing.
It felt for all the world like a chest infection, but it had been going for the whole summer. I have been to the GP several times, I had a chest Xray, which came back ok. Also my peak flow test was good. I run and play badminton regularly.
Apart from this thing, I feel well and am in good shape.
I think, although nothing as yet has been diagnosed, they suspect Acid Reflux of some kind. I’m scheduled for an endoscopy tomorrow (Friday) If he diagnoses some kind of gastric condition, I’m guessing he will probably prescribe PPI’s in an even higher dose. ( I haven't been taking them for the last 3 weeks)
I am reading almost every week of studies telling of the dangers of long term use of PPI’s.
That is my dilemma.
I understand the question, do the benefits outweigh the risks. I suppose that’s what it may come down to. However I am worried about taking high doses of this drug continuously into the future.
I would appreciate hearing any of your experiences and any advice, and if you know of any less harmful alternatives to PPI’s.
PMR Pro, I know we did have a short discussion on this subject a couple of years ago. Grateful for any help as always.
My very best to you all. Ron.
Ron Jones.
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birdwatcher
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Hello birdwatcher no advice I’m afraid but just wanted to say how pleased I am your PMR is in remission. I am sorry to hear about this new problem however. I only took a PPI for a couple of weeks when it was handed out with the intial Pred tablets. It made me feel so ill I stopped it quickly-in retrospect maybe a blessing in disguise. I think it was PMRPro who said you could use ratinidine (Zantac) as you were weaning off it-you can buy Zantac over the counter but in lower strengths than that prescribed.
I have had two friends that had a lot of investigations this year for acid reflux( both had been on longish term nsaids and PPIs) Nothing much found but both are well now and enjoying food and drink again after some months of having to sleep upright.
Thanks Maisie 1958, Kind of you to reply. I don’t have any trouble sleeping, (thankfully) and my symptoms are relatively mild, however I really want to get to the bottom of what is going on. I’ll see what the consultant has to say after the endoscopy tomorrow.
Thank you-I am well but stuck on 1mg pred daily despite trying to reduce more. I had ENT appointment in August to investigate Pulsatile Tinnitus and during that I had endoscopy of nose /sinuses/upper airways , think he was just being thorough. Didn’t get any warning which was maybe just as well (or local anaesthetic) I don’t think the endoscope went right down into larynx though-could just start to feel a tickle at the back of my throat. It was honestly fine and over very quickly though I had to sit there for both nostrils to be done! The flexible endoscope was reassuringly thin. I would hope the ent part of your examination would be easier than the gastric endoscopy.
Also thank you for the information about Benedon insurance-very interesting. Hadn’t heard of it before.
Hello birdwatcher,l have been having a lot of Acid reflux, l was prone to it before l had PMR,it is worse when l have to increase the dose of Pred.l am unable to eat certain things as they make things worse,especially oranges and apples,it is hard to eat a healthy diet,even tea can be a problem.l shall have to mention this to my GP again,all he advised before was to try and lower the Pred .,and hopefully come off them completely.l,tried lowering the dose and had a flare which meant l had to increase the dose .l do not like taking any tablets unless l really have too ,lbuprofen would definitely not be suitable .l find that over the counter antacids usually ease the reflux,and l,am thinking of trying Gaviscon too.l found that during the hot weather l developed a cough and had to use my asthma inhaler most days when l had not had to use it for months .l believe the air became very polluted in the very hot weather,especially in the area where l live ,l felt that there was inflammation in my chest.lt cleared when the air became cooler and fresher.l hope that everything works out well for you,please let us know how you get on.
Thanks Grants 148, for your reply. I certainly will. I should hopefully have some kind of diagnosis by end of play tomorrow. My irritation is at the top of my chest- oesophagus or the back of my throat, I'm not sure which. I might have to have the camera up my nose to look at the back of the throat if the endoscopy doesn't show anything.Oh joy O joy, it's a pity they couldn't have done both at the same time. .
Hi Ron, I only took PPI (Omeprazole) briefly. I have had PMR for 2 and a half years. Currently on 6 mgs of Prednisalone.I do however share the chronic symptoms you describe. Prone to indigestion, attacks of intensely irritating coughs, a build up of phlegm and also my nose is often completely blocked. It has become my worst symptom. I have been putting it down to a Pred side effect but it has definitely worsened. I can’t decide if it is gastric or respiratory in origin, it feels like both. I can hear a sort of hiss in my chest, separate to my breaths. I know that this is not of much use to you and I will be interested to see your replies. I seem to fit the symptom picture for both GORD and Asthma.
Hi Jane, your symptoms sound almost identical to mine, only, (weirdly) mine didn’t begin until after I came off the steroids. It’s all so confusing. Since the weather has cooled down my nose and chest tightening has eased a bit. However As I say, I am left with this, what I can only describe as an upper chest throaty irritation. Sorry if this is boring. I must drive my my poor wife mad. I bore myself sometimes. Anyway I’ll keep you informed if you can bare it!
I know there is evidence that long term use of PPIs isn't 'good' but so far I have been fortunate and they have worked very well for me without any apparent serious side effects. It seems to be in my family - father and all sibs have had it although we all deal/dealt differently with it. I take the PPI Lansoprazole 30mg twice a day (a 'double' dose- nothing else 'worked') years before I had a diagnosis of PMR/GCA and so it was just a continuation for me - and the only other drug i take except for Pred (and some supplements). The throat irritation is something to be concerned about as it may signify you have a thin coating of 'acid' coming up from your stomach which can over time erode the lining of your oesophagus and lead to a condition called 'Barretts Oesophagus' which can be serious - even pre-cancerous. You may not have reflux which is this serious but if it is bothersome or worse painful over a long period long term consequences of non-treatment also have to be considered - yes that balance of long/short term and side effects is difficult to escape !
Thanks Rimmy, you are spot on everything you say and I do realise I can’t allow the symptoms I am experiencing to go untreated. It may come down to the better of two evils. However it would be so good if we could all find what the actual cause is ay!
I too have experienced discomfort in my upper oesophageal region. On occasion, mine was very uncomfortable and I assumed I had an ulcer. Omeprazole helped most of the time but on one recent occasion it didn't and I just had to have a sleepless night until the pain/discomfort abated. I had eaten deep fried food that evening, which seemed to have brought on the problem.
I had learned somewhere that acid reflux is caused not by too much acid in the stomach, but because the stomach is too alkaline and, for some reason this prevents the "valve" at the top from closing properly thus allowing acid to exit. So, I decided to experiment by taking apple cider vinegar to see if I could balance the acid in my stomach. I've been taking two tablespoonfuls every morning with water for the past two weeks and so far I haven't experienced the pain and discomfort of previous occasions. I'm not suggesting it's cured my problem but so far so good.
Thanks for you reply karools16, I read in a recent book I read by Dr Satchin Panda called “The Circadian Code” that the body adapts to PPI dose and you end up having to keep increasing the dose. (Not Good, I think.)
I’m so pleased that the Gaviscon has brought your symptoms under control.
Hi Birdwatcher,the irritation that l get is usually high up towards the back of my throat,and at the back of my nose,a sort of soreness which can be made worse by strong flavoured or sharp tasting food.l have had this problem most of my life and could never smoke ,there are a few people around here who have wood burning stoves and the smoke from those really affects my throat.Apple cider vinegar as suggested by markranson could be worth a try,l was once told by someone that vinegar and brown sugar was good for a sore throat,excuse the change in the writing,must have hit a wrong button.l do wish you a good outcome from the procedures you are about to have,l have complained many times to doctors about my problem but they seem to do nothing about it.please let us know how you get on.PS,the doctors just tell me that it is acid that causes my throat problems,as if l did not know that,l dread having colds as l can hardly breathe as the back of my nose is so sensitive.
Hi there, You poor thing! I know what you mean about some of the doctors.
Your symptoms sound tough. I would have thought that somebody would have tried to get to the bottom of why you are having this problem. I totally understand your frustration. That’s why forums like this are so helpful for sharing discoveries and information. The consultant I am seeing at 1pm today is quite good, I am seeing him privately through Benedon (It’s what I call a poor mans non-profit insurance service here in the UK.) It’s very good in my opinion. Anyway this guy , as I say is ok, but he seems in such a hurry. He answered my questions but if I hesitated or stumbled, he’d have you out the door before you could gather your thoughts. If you know what I mean. I will see how he treats me today. I’m hoping he’s going to be a little pacient and explain things to me. Mind you I am having sedation so not sure how much of what he says will resonate. I will keep you informed though.
Hi ya, For anybody that may be interested I have put up a post about what went on See, Endoscopy Update for Gastric Reflux As Promised. have a great weekend. GB.
Hi Birdwatcher while my husband was on Chemo and had to take more than 50 tabs a day we elevated the head of the bed by about 6" just put wooden blocks under the legs of the bed. I know it is very low tech but it works, I had suffered previously with Gastric Reflux and it helped me. It has no side effects better than trying stacking pillows which you slip down on at night, and, better still my husband a carpentry nut had wood lying about the free! Just make sure they are stable and big enough to take the weight of the bed and cannot move around. Obviously you will probably need medical treatment as well but no harm trying it in tandem. Take Care Angie x
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