I've had a bad few days with eating problems, then reflux. I realised I'd been forgetting to take my omeprazole ( the clue being waking up choking on the reflux - no sign of it yesterday). I take 2x20mg twice a day. I looked up omeprazole again, and found that one rare adverse reaction to it is lupus ( this was from the NHS site). Following up on that, I found the rare adverse reaction is SLE. There are several articles on it. One here
As far as I know, my oesophagul and stomach problems started nearly a year before other symptoms resulted in referral to rheumy. The very high dose of omeprazole I take is in order to prevent the reoccurence of oesophagul and stomach ulcers I had badly.
Just to add I do not have SLE, but others may find this interesting.
Edited to add I wrote this only half awake and may have the terminology wrong. The adverse reactions appear to be skin related only.
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Lupiknits
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I am not sure what it is I have right now. Still being investigated for some form of hypersensitvity type 111....does make one think!
My gastro - related problems began and then all manner of symptoms appeared to follow.
I too have choking with the reflux. Very unpleasant!
Looking back now, since being prescribed the Omeprazole, I have had all manner of skin problems. I am in the process of seeing a dermatologist for these. My legs are covered in awful, itchy, burning lesions and also have had them dotted around my body too. Been prescribed Elocon steroid cream for the time being. They seem to be fading, if not somewhat slowly but at least they're not as painful.
Before my infant onset lupus diagnosis was recovered 6 years ago, i spent 6 years on daily oesomeprazole (after pantoprazole stopped damping down persistent nausea related to gastritis due, we now know to slow transit dysmotility bowel bacteria overgrowth) with domperidone daily much of that time. All PPIs I've tried make my IBSC-like dysmotility segue into IBSdiarrhoea-like dysmotility and they increased my rate of loss of bone density...
Now my gastritis is way damped down thanks to immunology's daily antibiotics successfully managing the bowel bacteria overgrowth (my antibiotics are prescribed due to what has turned out to be early onset hypogammaglobulinaemia primary Immunodeficiency...which began many many years before medics resorted to prescribing me PPIs)
Seems to me that my story underlines the importance of investigating each patient thoroughly enough to be sure they actually need PPIs...without cautious investigation & diagnosis of the causes underlying upper GI conditions PPI treatment can cause more trouble than good...In my experience, anyway 🤷♀️
Wouldn't it be great Coco if GP's had the time to investigate each patient thoroughly? If only ... Alas, we have to take charge of our own health, for our health's sake!
I am seriously thinking that PPIs are not the way forward perhaps for me too. I have access to my medical records and have discovered that my bone density scan- four years ago -records - 'osteopenia' I have never been informed of this fact and I am cross and upset to learn that PPIs can lead to osteoporosis! And of course, as no one has the time to read through records from that far back, the tablets are automatically prescribed. My next DEXA scan is August of this year. It will be interesting to see what has changed.
As I mentioned in a previous message - I have lots to learn.
Thank goodness for this site! And also for the people with varying degrees of knowledge, helpful hints and lots of encouraging words.
If I looked at my 40 years in the diagnostic wilderness and added up the cost of all the time my GPs wasted looking at my case from the wrong angle...+ the cost of all the wasted referrals to see consultants who did the same... + all the prescrip meds I was on for the wrong reasons (which hardly helped at all).... + all the costly emergency treatments the NHS had to give me because no medics had the common sense to take a quick look at my case across the board & recognise the clear signs of immune dysfunction & connective tissue disorder...I think the sum total would be quite a decent amount of £££££££!
After 6 years on this forum, I realise GPs do have the time to recognise signs of immune dysfunction & connective tissue disorder...just as they do now have to make the time to recognise signs of topical conditions like sepsis....my feeling is that they just need the "motivation" to actually be bothered to look....hopefully the current increase in publicity given to autoimmune conditions & immunologic treatments will mean more medics do feel more motivated 😉
That said, I am really sorry to read it has taken you forty long years to reach a diagnosis! 😏 💐 One can only begin to imagine the cost of that on your health too! I do hope I didn't come across as flippant. 🙃
Who would guess from your colourful, upbeat (and very informative) messages that you were even born forty years ago. 😳
Well, 😅I'm 63...I was originally diagnosed with lupus v easily and quickly as an infant ....but my mother & doctors kept this a secret...I just thought I was v sickly as I grew up...at 21 I left my country of birth to live in the UK where the NHS took over my care as unaware of my lupus as I was (while my mother kept her secret and just watched my health relentlessly deteriorate for 40 years....in 2011 when the NHS finally figured out I had lupus, my mother's comment was: but dear, you've ALWAYS had lupus! My reply to her was: what's lupus? (I'd never heard of the condition)). My mother is a bit "different" 😉...I love her & care for her but am careful of her...she is a Trump supporter and, like some of them, thinks only bad people get sick...her health advice to me has always been that I should pray more 😔
I guess I've learned to be upbeat during 30+ years of watching my husband & his sister bravely cope in an upbeat way with early onset Crohn's disease involving many major bowel resection surgeries 🤷♀️. But, for sure, I've had vvvvv low phases during the past 40+ years...am mainly upbeat now thanks to this wonderful forum full of dear friends + cause my lupus meds are helping so much...it's great you're here too 🍀😘
I can only begin to imagine how that must have been for you to deal with as a child - and to discover the real reason behind being so unwell for so long at such a later time in your life!
Hats off to you for being so kindly towards your mum...it can't have been easy. As you say, she is your mum and you are loving and caring towards her. Praying is not a bad thing - alongside conventional medicine.👍🏻
It can't have been easy and some days must have been downright depressing. Even I can go with that - wondering what is around the corner to greet you. However, we pick ourselves up and carry on regardless. Not always that simple!😔
It's lovely to chat with you. And I thank you for making me feel welcome, less alone and sharing an insight into your 63 😳years of life. I can't believe it really, but there you go!
To add to that - one problem with omeprazole is that when you stop it suddenly you may have rebound acid production, you produce far more acid than you would have normally. PPIs should be tapered like corticosteroids.
The FDA recommends that PPIs should not be used for more than short periods at a time - measured in weeks, not months or years! How are PPIs used in the UK? They are handed out like sweeties - without any thought of the potential problems that may arise such as osteoporosis due to reduced calcium absorption (in that respect they are worse than steroids).
The other day while sorting my anticoagulant prescription for the next year, we were discussing how the new generation anticogs go down (in every sense of the word) and my lovely cardiologist here said that she finds they are generally well accepted though occasionally patients arrive and say they get indigestion and need a PPI - which she is horrified at and won't give "as it introduces another layer of side effects" (I quote) and she would rather try a different drug. I nearly fell off my chair!!!!!!!!
'Tis true...they are handed out like sweeties!! I am testament to that.
At my appointment to discuss my 'reflux' problems - (there were others relating to ongoing symptoms but that was all down to anxiety about the reflux-apparently). Ihad no sooner said the word 'acid' when I was promptly handed a tick sheet and pen and was asked to fill in. The Dr totted up my score and I was duly informed - "a classic case of reflux!" The prescription was printed out and signed and the parting words, "if your symptoms persist, make an appointment and we will discuss!"
Very scary how much I take and for how long I have! Two endoscopies showed active ulcers then healed ones with scarring, restricting the oesophagus quite a bit. At the time they were concerned it was very serious, but the biopsies were fine. I am going to raise the question of the really big dosage and consequences though.
Good to hear that the result of biopsies were fine. A thumbs up for that!
I look forward to the response you receive from your GP regarding whether you need to continue with your prescribed dose.
Perhaps I need to investigate whether I should be on a continuous supply. As PMRpro mentioned the FDA recommends PPIs should not be used for more than short periods at a time. I have been using them for over a year now. Not long in some peoples book. I suppose it becomes a habit and the monthly prescription request never reviewed. Def something to consider.
GPs are often too willing to hand out these. I was prescribed then but desisted after a week because I felt awful on them. I control my GERD through diet, routine and very rarely an antacid or apple cider vinegar. Problem with GERD is that you don't know if you produce too much, or too little, acid.
As far as I'm aware it's one of those raft of symptoms that comes with autoimmune dysfunction. Need to be so careful with the meds too though, and the report is interesting for that. I wonder how many of our problems are med related or disease related (which is not to say they aren't needed).
I had to insist on getting coated Pred. and only got them after saying I had side effects on PPIs.
I had a very bad allergic reaction to pantoprazole a few years ago and ended up in A&E. I was later found to be allergic to omeprazole and lanzoprazole too. Lanzoprazole is we'll known for causing skin reactions, rashes and photosensitivity.
So sorry to hear about your bad reaction to the tablets. Scary to say the least.
The more I read about these, the more reluctant I am to wish to continue. I am going to mention this to the rheumatologist at my follow-up appointment.
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