PMR/Hiatus hernia and PPIs: I’m not sure what to do... - PMRGCAuk

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PMR/Hiatus hernia and PPIs

Lclmlbls profile image
37 Replies

I’m not sure what to do now. I was diagnosed in February with PMR and prescribed Omeprazole and 15mg pred (now down to 10mg). Hiatus hernia was discovered during a scan a couple of months ago. No particular problems with Omeprazole but asked for a different PPI after reading negative reports about a possible link to dementia after long term use. Then prescribed Lansoprazole which caused diarrhoea and finally on 15th November started Pantoprazole. For the past 2 mornings I have blood in my stools which is alarming. I’ve just done a FIT test (requested by my GP for the diarrhoea). My GP said yesterday I could either carry on taking the Pantoprazole or stop it. The FIT test result is crucial.

Im unsure what to do. It was suggested I should go to A&E if the bleeding got bad over the weekend. Should I stop taking it and buy maybe Gaviscon (tablet or liquid) to stop GERD? My GP is not available until Tuesday.

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37 Replies
Oxfordboy2 profile image
Oxfordboy2

Hi,This is only my personal opinion but like you I was prescribed other meds to take alongside prednisolone.I don’t like taking anything I may not need so in the case of omeprsole I did not take them as I have never had gastric problems before.As it turned out pred did not upset my tummy so I never needed them in the first place.Hope this is helpful in making your mind up.You wouldn’t take paracetamol before a headache started so why ppi

Lclmlbls profile image
Lclmlbls in reply to Oxfordboy2

Thanks for your reply. I did have a few reflux problems before starting pred. I didn’t know about the hiatus hernia until I had a scan in A&E for a very bad groin pain a couple of months ago, which went as quickly as it came with no reason found.

PMRpro profile image
PMRproAmbassador

I'd ask to switch to an H2 inhibitor - famotidine or cimetidine - in the short term until they investigate the blood in the stools. Is it bright red fresh blood? If so it is more likely to be piles but you never know. And Gaviscon is always useful - but it won't stop the GORD, just protect the gullet from acid.

Having hiatus hernia makes it a bit different with regard to not taking anything - had it been a problem before? They didn't put you on alendronic acid did they?

Lclmlbls profile image
Lclmlbls in reply to PMRpro

Many thanks for your reply. I will mention an H2 inhibitor on Tuesday if I manage to get an appointment. It is bright red, and piles was my thought too (and something I have experienced in the past, but not since taking the PPIs) but I felt it wasn’t quite the same. I had suffered with reflux, particularly at night, although I wasn’t aware of the hiatus hernia until a couple of months ago. Alendronic acid not mentioned.

Lclmlbls profile image
Lclmlbls in reply to PMRpro

Re the gaviscon, I think I need to take something at least to stop the possible reflux now I’m not taking the PPIs. I decided not to take the Pantoprazole this morning. Would you say the gaviscon liquid or tablets would be best?

PMRpro profile image
PMRproAmbassador in reply to Lclmlbls

No idea to be honest - you can get H2 inhibitors at a low dose OTC from any chemist and probably supermarkets in the UK. Have you used Gaviscon before? The tablets are convenient, the liquid maybe faster.

SnazzyD used Gaviscon as well as the acid inhibitors - maybe she can help with that aspect

Lclmlbls profile image
Lclmlbls in reply to PMRpro

Have obtained the gaviscon liquid. Re the H2 inhibitors , I just read they should be used with caution for anyone with kidney problems. My GP is redoing blood tests related to my kidneys in 3 weeks as they were abnormal. Nothings easy is it? 😳 Thought I best steer clear of them until I’ve had chance to talk to her.

PMRpro profile image
PMRproAmbassador in reply to Lclmlbls

PPIs are even worse I think

link.springer.com/article/1....

Maybe put in a request for enteric coated prednisolone? They may protest about cost - but would be cheaper than GORD or renal failure!

Lclmlbls profile image
Lclmlbls in reply to PMRpro

That report is scary! I had no idea PPIs were so damaging. I have had most of the symptoms, not all, of CKD over the last few months but kidneys weren’t on my radar so I put every symptom down to PMR or tapering steroids. I will definitely ask about the coated prednisolone.

SnazzyD profile image
SnazzyD in reply to Lclmlbls

I couldn’t tolerate the PPI’s and the H2 type worked for a few weeks before the high Pred dose just made the reflux very bad. In the end I had to have coated Pred. Anyway, when I stopped the PPI, even when having the H2 instead, the acid was quite bad until the H2 seemed to take over or the PPI effect died down, I don’t know which. When the H2 stopped working, stopping that caused another rebound acid bout that lasted about 2-3 weeks before it settled; it was bad. During this time I took Gaviscon after meals and especially at bedtime for reflux. Once it all settled with no more pills and coated Pred, Gaviscon alone was fine. What I’m saying is that the transition can be bumpy.

Lclmlbls profile image
Lclmlbls in reply to SnazzyD

Thanks for that information. I will have to learn to be a more patient patient and let things settle down!

Drip21 profile image
Drip21 in reply to Lclmlbls

I find liquid gaviscon better than the tablets

SnazzyD profile image
SnazzyD in reply to Drip21

I did too and Gaviscon advance has less sodium and more potassium which is good when Pred is over 10mg and one tends to retain sodium and be depleted in Potassium. This is providing you don’t have any medical condition that makes you prone to potassium overload.

Once Pred was low enough to only need Gaviscon at night I found that I didn’t get through the larger (and cheaper) bottles fast enough before the taste went off. At that point I switched to tablets. Each to his own.

Suffererc profile image
Suffererc in reply to PMRpro

Would AA be a problem

PMRpro profile image
PMRproAmbassador in reply to Suffererc

Any swallowing or reflux problems should be a contraindication

"In addition, the low pH of gastric contents causes alendronate to be converted to its free acid form, which has been shown to damage oesophageal mucosa. This conversion of the drug in those with gastro-oesophageal reflux or hiatus hernia could lead to increased risk of mucosal damage"

sciencedirect.com/science/a....

Suffererc profile image
Suffererc in reply to PMRpro

Thank you

Sharitone profile image
Sharitone

I use Gaviscon liquid at night when omeprazole is not quite enough. A note of caution: it does cause a bit of constipation!

Lclmlbls profile image
Lclmlbls in reply to Sharitone

Thanks for making me aware of that. It’s just as well to know these things.

I’m just fed up with the whole thing!☹️

Missus835 profile image
Missus835

I've been on Rabeprazole for a few years after having problems with all those you've listed. No issues with it, but would like to come off it when I get down lower on the Pred. Dementia runs in my family, so don't want to push the envelope. The bleeding is alarming. Do you have hemorrhoids by any chance? Hope you feel better soon.

Lclmlbls profile image
Lclmlbls in reply to Missus835

Thanks for your reply and good wishes. I always had problems with constipation and bleeding prior to Omeprazole but not lately whilst taking the various PPIs. No bleeding today thankfully so is probable was the Pantoprazole.

Missus835 profile image
Missus835 in reply to Lclmlbls

What tapering regime did you use to get off the ppi. I'm on 2 per day and want to get dowb to one, then none. Thanks

Lclmlbls profile image
Lclmlbls in reply to Missus835

PMRPro suggested a tapering programme which I can't find now. I was taking 20mg Omeprazole daily. I started with alternate days then found out I could split the capsules (what a job that was!) and did that for a few days with yoghurt then missed a day, then missed a couple of days and so on. However, the reflux came back, hence the change to Lansoprazole (which caused diarrhoea) then changed to Pantoprazole (which caused bloody stools!). I have had no PPIs for 3 days without consequences but have the gaviscon on standby. Good luck with the tapering.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Missus835

Just use one the plans we talk about for Pred reduction— see FAQs - tapering plans

phebamom profile image
phebamom

Have you tried Pepcid AC. I had to stop PPIs because I am in kidney failure. PPIs can destroy your kidneys if taken for long periods, and especially if doctors do not monitor the patient while on the PPI. They are not harmless medications just because they are OTC. Pepcid AC is not a PPI, it is an H2 blocker, totally different medication. Also, there are a couple of books, one is titled "Dropping ACid", the other is the low acid diet. The problem with prednisone is not just that it is a stomach irritant, prednisone does the same thing to the stomach and intestinal lining that it does to our outer skin, it thins and weakens it. I found that foods containing a lot of citric acid, i.e., juicy juices, candy, etc. really wreaked havoc with my stomach. I have chronic dyspepsia, diagnosed many years ago, so have a lot of experience dealing with this issue. The best thing for a hiatal hernia, is small meals, low acid, nothing after six in the evening but water. Hope you find some answers

Lclmlbls profile image
Lclmlbls in reply to phebamom

Thank you for your very useful reply. I suspect that the PPIs have had effect on my kidneys. I have been investigating the possible meaning of the blood results but don’t want to jump the gun as I need a retest one month from the original. I read so many things yesterday, all in a bit of a panic, and can’t remember where I saw that H2 blockers weren’t good for kidneys.

This is my second day without any PPI or indeed gaviscon and 🤞🏻no bad effect. I will just have see how it goes. Thanks for your helpful suggestions. Do you have coated Prednisolone? If so are you able to cut them when tapering ?

PMRpro profile image
PMRproAmbassador in reply to Lclmlbls

Long term H2 blockers aren't good for kidneys but the article I read felt they were less worse than PPIs!

You have tapered the PPI dose haven't you? Otherwise you are at risk of rebound acid production which could be bad.

Lclmlbls profile image
Lclmlbls in reply to PMRpro

When I reported the bleeding to the GP she said I could either continue or stop the Pantoprazole, she didn’t say anything about tapering. Nor did she mention tapering when we had the discussion about withdrawing from Omeprazole, although I did my own tapering regime with that. Up to now (this will be the 3rd day without PPIs) I haven’t had any problems - yet.

PMRpro profile image
PMRproAmbassador in reply to Lclmlbls

How long have you been on the PPI? After even a few weeks some people need to taper.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lclmlbls

You cannot cut coated Pred - otherwise you defeat the object of having them..…. But you can get 5mg, 2.5mg and 1mg

Lclmlbls profile image
Lclmlbls in reply to DorsetLady

Of course, how stupid of me! 🤭

PMRpro profile image
PMRproAmbassador in reply to Lclmlbls

Down to 2mg you can combine the 5, 2,5 and 1mg enteric coated tablets to give 1/2mg steps. However, part of the aim with the DSNS taper was to be able to slow the taper with e/c tablets since at the time they only came in 5 and 2.5mg doses and that meant either using plain pred or dropping 2.5mg at a time.

phebamom profile image
phebamom in reply to Lclmlbls

I asked my rheumatologist about coated pred. It is not commonly used in the US. My Dr. said the prednisone is going to dissolve somewhere along the pipeline. Prednisone dissolving in the intestines instead of the stomach is still damaging, just in a different part of the body. A lot of people take their pred with yogurt. H2 blockers are nowhere near as hard on kidneys as PPIs. If you have bad kidneys everything is going to be a stressor unless it is something processed strictly in the liver.

PMRpro profile image
PMRproAmbassador in reply to phebamom

The difference is that the stomach is a very acidic pH and the acid part is more damaging than further down the gut.

phebamom profile image
phebamom in reply to PMRpro

This is true, but I have issues with my gut also, so it seems I am always stuck between a rock and a hard place concerning health issues. I have IBS and have been hospitalized more than once with small intestine blockage. So, rheumatologist thought the enteric coated prednisone would be a bad ideal for me. I have been on 5mg. for several years now, and it no longer bothers my stomach. I was just diagnosed with MGRS, and will be starting chemotherapy for it next week. Chemo for this disease, which is very rare, usually includes steroids. Some days a person just can't win Heck. I would settle for just breaking even,

Lclmlbls profile image
Lclmlbls in reply to phebamom

Thank you for replying. It’s so useful to know peoples’ experiences. A possibility of IBS has been mentioned a couple of times by GPS but not diagnosed. Im sorry to hear of your recent diagnosis. I hope your treatment goes as well as it can.

PMRpro profile image
PMRproAmbassador in reply to phebamom

It's a moot point - not available in the USA as far as I know.

phebamom profile image
phebamom in reply to PMRpro

I think you are correct.

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