Coming off lansoprazole - UPDATE: After coco's... - LUPUS UK

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Coming off lansoprazole - UPDATE

whisperit profile image
31 Replies

After coco's helpful post yesterday, I did some more research on PPIs. One issue sprung out for me - the (rare) side effect of magnesium deficiency after longer term use.

To cut a long story short, this morning I asked my GP to switch me to ranitidine - just in case my current symptoms were caused, or exacerbated, by my long term use of lansoprazole.

I am likely to get some rebound acid stomach etc, which I am dreading, so here is my question:

Are there any ways of making the transition as smooth as possible?

All thoughts and suggestions welcome

X

UPDATE: After 10 days, the ranitidine was OK, but I definitely got more acid stomach, especially on waking and at the end of the day. And I didn't seem to have any change in my other symptoms. So I'm back on lansoprazole, and my stomach is good.

Thanks for all your helpful comments and suggestions

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whisperit
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31 Replies

My hubby takes Lansoprazole. Let us know how u get on. Good luck!

PMRpro profile image
PMRpro

If you are stopping altogether then you should wean off the PPI the same way you would wean off prednisolone, reducing the dose slowly. However - if you are immediately going to start ranitidine, I don't think it should be a problem as they work in different ways to reduce the production of acid. The rebound effect of simply stopping a PPI should be cancelled out by the action of the new medication. Maybe keep some Gaviscon handy?

whisperit profile image
whisperit in reply to PMRpro

I am hoping it will work like that, but my GP thought there would still be some rebound. Thanks for the reassurance.

PMRpro profile image
PMRpro in reply to whisperit

He may be right - but I don't see why. Ranitidine is said (by oldies) to be almost as effective as omeprazole - the difference is supposed to be miniscule. The reps probably over-egged the pudding when extolling the virtues of the PPIs though. As they would - since I bet it is different drug companies ;-)

Good luck with it though

whisperit profile image
whisperit in reply to PMRpro

Speaking as an oldie (!), I found omeprazole and lansoprazole more effective than the cimeditine or ranitidine that i used to take. But I am hoping for the best, thanks PMRpro

GlasgowHen profile image
GlasgowHen in reply to whisperit

I didn't get on with lansaprazole or omeprazole. Ranitidine worked brilliantly for me,I've been taking it for about 3 years now. Out of all my medication this is the one I love and would fight to keep! good luck with the switch

whisperit profile image
whisperit in reply to GlasgowHen

thanks rolybear, that's encouraging!

bluebell99 profile image
bluebell99 in reply to whisperit

It just goes to show how different we all are. I cannot take ranitidine or cimetidine as they produce too much "water" which I then vomit for several hours until it passes.

However I am fine with lansoprazole although I had to change to it from omeprazole because of constant nausea. Yet there is supposed to be little difference between the two so I don't understand that.

GlasgowHen profile image
GlasgowHen in reply to whisperit

Hope you got prescribed a decent dose. I take 150mg twice a day. Recently met someone in hospital and got chatting about all our medication. She had rheumatoid arthritis and said the same as me, I love my ranitidine!

PMRpro profile image
PMRpro in reply to whisperit

Do hope you are OK with it.

Mifford profile image
Mifford

I'm looking forward to reading any advice on minimising the reflux. It's one of the symptoms that I tolerate least - I've been getting hideous reflux lately to the point I worry about eating but if I try not to eat it gets worse. I was on omeprazole for ages and it worked brilliantly but then out of nowhere I got eye swelling and an allergic reaction over my eye that itched like crazy. I was switched to both lanzoprazole and ranitidine but had the same reaction on both. I was sent to the allergy clinic but they were totally bemused as the only ingredients that were common in both types of medication were present in other meds I take without any problems. I'm really struggling with coping with it at the moment - I've had to come off plaquenil recently as it was making this worse and upsetting my stomach so badly. I can't take NSAIDs for the same reason as they make my stomach bleed.

Any tips anyone has for stopping the hideous burning acid without ppis would be great.

Hopefully you won't need them woth the switch over though and I can steal all the tips for myself :)

maggielee profile image
maggielee

Hi all, Good discussion, both my husband and I were both on lansoprazole, I was told by a Lupus prof to get off asap as he felt that it was not good for people with lupus to be on them (lansoprazole) and told me to switch to Ranitidine and find out why I had the reflux and on them for years, conclusion was hiatus hernia, probably from having my daughter... I now take Rantitidine 300mg. and due to the hernia, make sure I eat sensibly (boring to some) and I do not eat late at night, I am finding wheat bread a problem and even plain white... I usually have to prop myself up when I sleep, more pillows and not lay flat as this really sends my reflux into overdrive, so no napping after eating ...it is not perfect and if I do not eat sensibly I pay for it and can get very sick I also take sometimes Peptac Peppermint Liquid to calm my stomach if is very severe heartburn.

Hubbie stayed on the lansoprazole and found out from a radio programme (probably BBC radio 4) that you should not be on it for more than 2 weeks (that was a shock to both of us). Seeking advise from our pharmacist he said he would have to wean himself off or medically 'step down'. So he put off taking the medication later and later each day for 4 days and stopped, then it got really bad and his body reacted ie reflux and he took it for 3 days, this was expected ie symptoms return and then stopped again and the reflux stopped. He too tops off with the Peptac if he has a problem now, especially after eating.

So I switch from one to the other and maybe it did cause reflux, it is not perfect, but I thought I needed to get to know what were my triggers ie sleeping flat, wheat bread. I know not to drink alcohol or I pay the price, etc.

There is a leaflet my husband gave me entitled NHS Proton Pump Inhibitors (Omprazole Lansoprazole...) Info for patients about treatment of heartburn and indigestion (dyspepsia)...long term management 'step down'...maybe it will help explain better than I, his pharmacist gave it to him. Let us know how you get on.

Wishing you well and be kind to yourself....ML :)

Juliette64 profile image
Juliette64

Hi Whisperit, I switched to

Ranitidine as well. After two months, skin all over my body began to peel. Top to bottom of feet . Now im back on lansoprazole.

No problem now.

whisperit profile image
whisperit in reply to Juliette64

Blinking 'eck, Juliette64. I'll keep an eye on that, then!

I'm juggling too just now after dumping both a while ago but using them as and when the upper gut problems get bad again.

As you know I've had a very bad sour taste for years now. It sometimes escalates to intolerable - so this time when this happened a week ago I started taking Ranitidine and Lansoperazole regularly from existing supplies - but not sure if dose as I threw away the boxes as I'm travelling -two Ranitidine and one Lansoperazole a day -Ranitidine one in morning and one at night.

Ranitidine has always worked better for me but gradually the gastritis /bad taste returned so I kind of gave up because life has been too chaotic to take these stomach protectors when not on any powerful meds to warrant - and not got gastritis all the time anyway.

However I do think the awful taste and gastritis go together but been more preoccupied with keeping on top of constipation -which only started a year ago. What a muddle I'm in now!

Got nerve conduction studies followed by endocrinology apt this morning after a terrible night of stomach pain and bloating - having taken Senna Plus 14mg (I bought this plus stuff having run out of script 7mg) ,one Ranitidine and one Lansoperazole. This stomach pain has been waking me nightly recently but think it's the Senna.

Part of my problem with all these is the trouble I'm having swallowing anything (Senna is traumatic to try and swallow!) just now so I have to drink a litre of water with it and then need to pee all through the night too! Seeing rheumy on Monday and GP on tuesday so may have a plan of action hopefully. Will let you know what they say about the Lansoperazole/Ranitidine combo.

Ps I didn't ever wean slowly off omaperzole or Lansoperazole which I took with injectable Methotrexate for two years. I just stopped overnight. No wonder the gastritis flared so badly each time I stopped! But once I replaced with Ranitidine things improved so hopefully will work fine for you. X

whisperit profile image
whisperit in reply to

Thanks, twitchytoes, what a pickle we get in once we are on so many meds! Sitting here this morning, I can count 18 different pills laid out ready for the day ahead!

Well, I have missed my morning lansoprazole (which has been brilliant at settling my gastritis up till now) and just taken my ranitidine...so watch this space...

PMRpro profile image
PMRpro in reply to whisperit

Fingers crossed - have you got some gaviscon handy just in case?

whisperit profile image
whisperit in reply to PMRpro

yep!

in reply to whisperit

Oh well if you are taking 16 pills then I'm guessing you can at least swallow them okay? I've become pill phobic now with swallowing difficulties!

Nerve conduction studies just showed very healthy responses from all my large nerve fibres. They don't test at all for small fibres but she (the neurophysiology consultant) was baffled by my description of tired limbs and seemed to understand that I was a tad disappointed that there was nothing to explain. Defo going to have to go the vitamin, mineral and diet route full pelt now as won't be offered further immunesuppressants or IViG. Relieved really except for worries that I'm going nuts!

No testing up here for PoTS/ dysautonomia she explained. All down in London and she feels sceptical that the tests are going to help people. This applies to neuro GI problems too such as gastroparesis. X

in reply to

Hi Twitchy

I'm disappointed that a doctor would say this to you as it is just not even remotely correct. In case you weren't aware, people in Scotland often get sent to Newcastle to their NHS autonomic unit and there are some around the country, not just London although the national neuro hospital is the most well known.

It's really important to have these tests to establish the actual diagnosis and to track the progression. Gastroparesis isn't always neurological anyway. I didn't know until today but there are tests to establish the cause of the autonomic neuropathy. There are drugs and that can be prescribed to improve symptoms and treatments but they are costly and you need the diagnosis. I've heard of people who've had their lives dramatically improved by concrete diagnosis and treatment.

Please don't let this woman put you - or anyone else - perusing a diagnosis.

in reply to

Thanks Crashdoll. Yes she was a disappointment to me as well - didn't seem on the ball with AI diseases etc and she gave my Addison's friend short shift over her numb feet too the other day. She was actually perfectly friendly and took over an hour testing me - but it was the galvanic and sweat/skin colour change ones she was discrediting as mainly used in the larger hospitals in the US she said.

I asked about GI testing for possible Gastroparesis etc but she just said this wasn't her area and would be for gastroenterology to determine. The endo was very disappointed too for all his PoTS and Dysautonomia patients as nowhere to refer them to now. If the rheumy isn't very useful on Monday I will ask about Newcastle because it's the lead UK hospital for Sjogrens - apart from Guys I think. I felt I've got nowhere fast today I admit. X

in reply to

Oh I see what you mean about the sweat and skin tests. My neurologist said that the skin biopsies are the gold standard in diagnosing a small fibre neuropathy. So, it sound like she was right in that respect.

in reply to

Well just to add a contrary note to this as well - my old GP ran a skin biopsy on me last year (about 18 months ago) and it came back negative for SFN. But my neurologist has diagnosed me regardless because she says these results aren't all that reliable for non length dependent SFN -as it is so diffuse and patchy and it depends a lot on the specialist knowledge of the neuropathologist who analyses the samples. I did query this as don't want yet another diagnosis to be presumed rather than definitive but she said my lip biopsy result is definitive and the rest e.g. Ganglionopathy and SFN and dysautonomia etc can only ever be conjecture.

Sjogrens is very closely associated with SFN and autonomic neuropathy, therefore in my case, she says it's the likely cause and these things can be diagnosed by her with some degree of confidence now -including autonomic GI issues. Hmmmm????!!!

in reply to

I don't know anything about neuropathy really. It's just what he said. I think it's more your area than mine. I'm not keen on the biopsy and I don't think it'll change anything for me anyway.

I'm interested that your neurologist diagnosed autonomic neuropathy/dysfunction without function tests. That said, you do need a doctor who specialises in this area and can offer the tests; tilt table, exercise, 48 HR ECG, autonomic breathing tests, bladder tests and of course various ones depending on part of gut affected (gastric emptying study, echo gastro gram, smart pill, manometry). It was explained to me in such a simple way with a computer analogy (maybe it will be useful for other). Basically, when you have autonomic nervous system problems, it's not your hardware but the software so on static imaging and in any camera tests, you will expect the organs to look normal. That said, there are some common features e.g. people with gastroparesis have food left in their stomachs during gastroscopies despite fasting due to slow transit time.

in reply to

I'd like to have it confirmed properly I agree. But can't afford to pay for this privately so am at mercy of my rheumy and neuro. I am also very unsure but think there are many forms of dysautonomia though and sjogrens makes some more likely than others. Could be wrong but this is what the endo seemed to think too and I trust his judgement.

Lupiknits profile image
Lupiknits

All the best. The head propping when you sleep is a good idea, as is not eating late at night.

Twitchy - have you tried lactulose instead of senna? Senna is incredibly hard for me to swallow, and a glug of lactulose helps me with the BuTrans effects.

in reply to Lupiknits

Thanks - I do plan to ask GP for more help with this on Tuesday. The constipation isn't just that though and all the other things like Laxido seem to aggravate my issues. It is as if my body has forgotten what to do to evacuate and I seem to have lost sensation too. Ugh! X

misty14 profile image
misty14 in reply to

Oh Twitchy

Sorry your having to battle so much and been put thru it at the nerve conduction studies. I know what it feels like to be disappointed when tests come back negative when you desperately need an answer and help for symptoms that still remain!. It's perverse not to be relieved at nothing but the problems don't go away!. Good luck for your Rheumy and GP on Tuesday!. Senna is harsh for our delicate bowels. You could see if he would prescribe Movicol, gentler but effective. Fingers crossed for you. X

MrsMouseSJ profile image
MrsMouseSJ

I was originally put on a PPI after my hiatus hernia was discovered. However after 6 months I really didn't feel good (or less good than usual!) and I had concerns about the long-term effects of PPIs. So I switched to Ranitidine. I didn't have an issue with the switch, although I found that some nights, before bed, I would need to take 10ml of Peptac in addition. However I now have diagnosed gastritis and the Ranitidine just wasn't powerful enough for me, so I've gone back onto a PPI, which is working well. Hopefully I will be able to come off it again at some point and go back to Ranitidine.

My GP (who is probably in her fifties) reckons that R is as effective as PPIs. However looking online through research on PubMed, this doesn't seem to be the case. But if it works for you, then great!

misty14 profile image
misty14

Hi whisper it

I have done the switch to Ranitidine very successfully and found it works just as good as the PPI. Hope the same happens for you. X

Cookiecutter76 profile image
Cookiecutter76

I've been on omeprazole for a couple of years because I take prednisolone and had bad gastritis when I started on it. The doctors here didn't think about putting me in a stomach protector when they started me on prednisolone which I find strange as when I took myself off the omeparole a few months ago (as I was down to 5mg pred and it was gastric coated) they all started demanding I go back on it again as it was so very important! I have started taking it again as I'm now taking 4.25mg pred and on non-gastric coated tablets again.

Anyway, when I stopped taking the Omeprazole, I went from my usual 20mg to nothing and was suprised that I didn't get much acid reflux. My stomach felt more acidy and I could taste it a bit but I mainly felt kind of sick, achy and off my food for a couple of weeks, so it wasn't too bad. Hopefully, I'll be so lucky the next time I stop it, but by then I'll be off the steroids and as I'm doing such painfully slow reductions on them, it probably won't be for quite some time!

Good luck on your switch - I hope it goes really smoothly!

x

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