PPIs - interesting article
npr.org/sections/health-sho...
I just saw this article about the downsides of PPIs (the omeprazole-like meds we are taking for acid reflux).
According to it, it appears that PPIs are linked to kidney disease risk.
I don't know how accurate this is (and I don't want to panic people here) but it's always good to be cautious when taking these drugs for more than 2 weeks, in my personal view. And I'm no doctor, so form your own opinion, of course.
I was put on PPIs as I have a hiatal hernia but I've been concerned to see that there is emerging evidence that they can potentially trigger a range of problems - although I wasn't aware of the kidney disease risk until now; so thanks for this!
The trouble is, without some type of acid surpressant, I experience awful symptoms and there is the long-term risk of damage (potentially leading to cancer) affecting the oesophagus, lungs, throat, etc. So I've compromised with an older, less potent drug, Ranitidine or Zantac, which is a histamine-2 blocker. However I've yet to find any reliable information on the degree to which it surpresses stomach acid, although it is evident that in my case that it doesn't have the long-term, 'heavy' effect of a PPI. It feels like being stuck between a rock and a hard place, but then that is the case for many with chronic conditions for which medications with some potentially very undesirable side effects are a fact of life.
Zantac is as good as the PPIs according to gastroenterologists, who, you may be surprised to know, are sometimes surprised at the speed with which non-gastro specialists initiate their use. They are quite happy to use the older stuff as they have different side effects.
Interesting; I didn't know that Zantac is as good as a PPI. The latter was 'sold' to me as being the most effective by a number of GPs. No one mentioned any down sides and it was only when I started to look into this and then saw the FDA warning that you mention that alarm bells started ringing. Then I started to feel quite unwell on Omeprazole, beyond my usual sense of being unwell - but I had to work quite hard to convince the GPs that I should switch. I can't say I'm thrilled to be on Zantac either but it seems to be more suited to me and I am only hoping that the long-term effects will be fewer and less extreme that those induced by a PPI.
I think it is another case of superb marketing - like Fosamax for osteoporosis and statins. Doctors who were convinced by the drug reps story for anything like that at a particular stage of their training are very difficult to persuade otherwise. PPIs weren't going to sell if they weren't "better" than the existing drugs - so that was the sales line.
I considered being a drug rep 40 years ago, we had a friend who was one, but decided not to bother. In retrospect I was glad I did because the job changed so much. Instead of being totally knowledgeable about all aspects of their products, reps became secondhand car salespersons - and your sales skills became far more important than your knowledge. I worked in the medical market research field for many years, translating the final reports which are the guideline for the next stage of a clinical trial/launch of a new drug. I saw how when doctors said " this is what we want" in the focus groups, it turned into "this is what this new wonder-drug does" in the marketing campaign. And I saw what the doctors really thought. Really not the same thing. I also saw how, while the top consultants involved in the trials were often sceptical, at GP/office based practice level there was far less such scepticism.
A lot of money is wasted in the NHS on such drugs when the older, cheaper ones would be just as effective and more is known about the side-effects since the real clinical trial starts the day the drug is launched onto the market for hundreds of thousands to use. It is, of course, also the reason that we see the media screaming about the NICE refusing to fund a "miracle drug" for cancer - that actually may, possibly, give someone a couple more weeks if they are very lucky at a cost of multiple tens of thousands pound per year. There is some evidence that in some case patients may well have died sooner while on some of these so-called miracles. Their QOL of life was certainly poorer.
Sorry - rant over 
Not at all; all most interesting but, sadly, what I suspected. Just over 15 years ago I knew an American female medical sales rep. I think that the kindest way of putting it is to say that she certainly didn't manage to shift stuff due to her medical knowledge! (she was a very attractive woman) I always hoped she wasn't typical...
But the type of behaviour/thinking you mention isn't just confined to medicine of course. I worked in policy for central government and all too regularly I witnessed how complex, nuanced information/data gets adulterated and turned into overly simplistic, 'good news' 'solutions' (at the hands of politicians usually!) - which generally never are.
Or "bad news" - like "fat kills", then a total refusal to see how obesity has risen as low fat took hold, or with alcohol as we've seen this week.
Even the US, the former land of prohibition, doesn't claim a drink will give you cancer! Then they wonder why everyone goes "Pffftt - they'll tell us something different next week so I'll carry on as before!".
Ah, indeed, indeed....
Some time ago the FDA issued a warning that PPIs should not be used long term because of the risk of side effects.
Until you have used a new substance for a long time in many many patients you cannot know what the longterm risks are. That happens once a drug has been approved for general use. All clinical trials can do is identify whether it is safe to use and whether it works as it is claimed to do. Once it is released for general use the truth starts to emerge and many substances turn out to have feet of clay. Particularly when used week after week, month after month as PPIs now are in many patients.
You may also be interested in this article (one of a load I found about PPIs and renal problems written in the last 10 years):
pharmaceutical-journal.com/...
They say it is not common - but look at the symptoms of interstitial nephritis quoted. Would any of you recognise that this was something new? They sound like the symptoms we all suffer anyway!
PPIs cause osteoporosis because they create the wrong conditions for the absorption of calcium, it's a very simple equation. Omeprazole has the worst reputation for most of the side effects - though it isn't clear whether that is more to do with the fact it is used far more than others - but I do know several people who had horrendous bowel problems (to the extent of not being able to leave the house) with omeprazole that cleared with lansoprazole. But many people do very well with ranitidine - it's cheaper and has fewer side effects. If it works OK, why go for the sledgehammer to crack the nut in your hand?
I was on omeprazole for 10 years and recently changed to lansoprazole because of increasing nausea, which seems to have now settled.
This link with kidney disease is news to me, also the osteoporosis risk as I already have borderline osteoporosis. I have refused alendronate because of the reflux and I'm not keen on the infusion as if I had a bad reaction it is in the system and there is no antidote. I have much to think about.
I have severe reflux, so much so that it affecting my voice. An endoscopy I had last year stated I have polyps in my oesophagus which is apparently quite common, something else to be aware of. Unfortunately I cannot take ranitidine or cimetidine as both make me very sick so I seem to be between a rock and a hard place.
Any advice gratefully received please.
hello bluebell. i very much relate to your crunch re treatment for osteoporosis. it took me 15 years to finally allow myself to be given bisphosphonate treatment for osteoporosis. at first rheumatology wanted me on oral bisphosphonates, but these were contraindicated by my chronic upper gi stuff....and besides i was so unwell generally + none of my doctors seemed to know or even be looking for the cause/s underlying my multisystem illnesses....which made me anxious about taking heavy duty meds like bisphosphonates...then rheumatology wanted me on IV bisphosphonates, which seemed even scarier to me. so i researched pharmaeutical bone density treatment and also lifestyle methods of boosting bone density...and did the best i could (difficult at the time because i was so disabled due to my infant onset lupus diagnosis having been lost when i left home at 21). finally last autumn i felt that my version of lupus etc was well enough understood and managed for me to dare try IV zoledronate overseen by the head of my lupus clinic. i'm lucky, in that so far no severe side effects are apparent. there it is, my experience, for what it's worth...
NB our cases of chronic upper gi issues aren't identical. although i have chronic gastritis & oesophagitis, i have been lucky enough to be able to use lifestyle management to keep my reflux down at average levels (this was checked at motility lab in 2003 well before my lupus diagnosis was recovered). even so, my reflux was bad enough to give metaplasia of a gastric type in my oesophagus, which is monitored. although my voice has always been & continues to be affected by my versions of SLE & SS.
hope something in there is useful to you. please feel free to PM me if you feel like going into this more
coco
Article about feeing up GPs time 
BEST ARTICLE I HAVE READ SINCE DIAGNOSIS
Interested in finding out about how hereditary Lupus is
Terrible heartburn sore throat 
Do you have any suggestions for a future 'Topic of the Month' article?
Great link!
I'm especially interested because my kidneys are struggling...and I've taken a lot of PPI in the past
For what it's worth: I was on daily high dose PPI (due to chronic gastritis & oesophagitis) for 6 years way before my lupus diagnosis was recovered 5 years ago. I'm 62 now. Back then my rate of bone density loss was so high that the NHS wanted me on bisphosphonates, which seemed a bad idea to me as any reaction to these powerful meds might cloud my chronic symptomatology. So I started researching bisphosphonates & PPI....and discovered the body of credible evidence that PPI interferes with the processes that help us build bone. So I weaned myself off daily PPI - although my GP told me I'd need daily PPI for the rest of my life. I also began an antiinflammation diet involving sipping fresh ginger tea a lot, which probably helped me stop the PPI OK. As a result of stopping PPI, my rate of loss of bone density did reduce enough for me to put off bisphosphonates for over 10 years (last year I finally let them give me bisphosphonates, but in IV form due to my chronic upper GI conditions)....In 2010-11 the NHS finally recovered my infant onset lupus diagnosis & the daily systemic treatment began which is helping me greatly today. Now I take PPI when on higher dose pred, and when taking NSAIDs...but not regularly
🍀 Coco
I've been in hospital over Xmas and was given NSAIDS and uncoated prednisolone, together with omeprazole. As soon as I started with the omeprazole my tummy went berserk, so I stopped it. I was then given a stronger NSAID for pericarditis and that caused a lot of acid reflux in the absence of the PPI. So much so that my chest is burning with it now.
Thanks to your very kind suggestion about the ginger tea, however, I'm hoping that I will soon resolve it the natural way.
Honestly, these drugs are poison.
Ugh: what a horrible experience.
When I mainly stick to an anti inflammation diet everything goes better for me. And the fresh ginger is a key ingredient in my version of that sort of diet.
But oh boy do I ever still need the PPI with my migraines NSAID + with certain of the lupus meds that are improving my life so much that at 62 I feel better in most ways than I have since my 20s
Back during those bad 6 years I was on daily PPI, I had constant loose BMs verging on diarrhoea (apologies). My GP used to tell me that was inevitable. I stuck with the PPI out of desperation: cause the PPI did reduce my gastritis & oesophagitis....
These decisions re meds are so often a a dreadful trade off
It isn't inevitable - you use another drug, like ranitidine.
Which is trade name Zantac, I think. thanks: will ask my GP about a trial!
Correct - it's habit, I always use the substance name because that is always the same. I have to put the brain in gear to remember to use the brand names!