I have been on a ppi for probably 20 years now but have oesteoporosis and SIBO now too which can be caused by long term ppi treatment. I wanted to ask if any of you have had any luck reducing your dose of ppi. I have UCTD with Scleroderma gut involvement which includes SIBO, Aperistaltic oesophagus, reflux of course, and a hiatus hernia. I was managing on a reduced dose of 15mg of lansoprazole but unfortunately my oesophical spasms have returned. I believe this is exasperated by taking rotational antibiotics for the SIBO. My gastroenterologist has suggested this could be better if I took Rifaximin but I would have to get it privately as the NHS will only prescribe under exceptional conditions. Rifaximin is better because it’s not systemically absorbed. I wouldn’t mind paying for a course but I’m worried it would be a regular thing and it would be upsetting to get better and then later not be able to afford it. In the meantime, have any of you with similar problems had any luck with reducing your ppi or am I being unrealistic. My rheumatologist has told me to up my ppi to 15mg twice a day but can’t prescribe Rifaximin and has told me to rotate between Cefalexin and one I’ve not taken before Co-amoxiclav. One of the problems is the 3 a day dosage as that means taking close to bedtime! Any advice appreciated.
Sue
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Halfwayuphill
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I have the same problem, scleroderma and on ppi’s for 20 years and I get awful SIBO. I tried over a few weeks to reduce the dose on 1 of the 2 tablets that I take daily. I was very slow and was thrilled when I got down to 1. A few days later, the reflux was back and was extremely painful, so I had to start taking it again!
Thank you for your answer MissusTee. Yes it looks like we are stuck between a rock and a hard place. I thought someone might have found the answer but with these problems it’s all a juggling act really. Just started the co-amoxiclav and going to go back to full dose for now.
I’m sorry you have ILD which must make it all the harder. I did have my lung function and heart checked a couple of years ago and no deterioration. I have been moved to I believe your consultants department who does a day at the Royal Free because Professor Denton believed I’d developed SIBO amongst other things. I know she is based at Birmingham. I saw a clinical fellow (name escapes me!) I’ve only had one appointment over a year ago and I’ve not had to resort to having back to back antibiotics but I was getting like that a few months ago. I rang the helpline at the Royal Free several times. He was very helpful and good at ringing back and did suggest I may have to take them as you. Things worsened after a virus (could have been Covid) which caused pneumonia apparently. I Don’t think I helped with lower dose of Lansoprazole as may have been caused by reflux. I think I should probably accept I need the 15mg x 2 a day as getting off comparably lightly.
Hi I take 60mg twice a day of Lansoprazole. I had sudden acute gastritis last year after a long series of viral infections with anti inflammatory drugs. If I try to reduce it the gastritis returns. I can't eat any fibre or fat or dairy. I have tried to return to more foods but it just causes more gastric and abdominal issues. My rheumatologist is happy for me to stay on this dose.
I’m sorry you have been unwell.I take 30mg of lansoprazole twice a day and ranitidine twice a day ( or substitute now it has availability issues). I know any reduction would be agony for me and I would not be able to lay down so I’d have to sleep sitting too. The danger is really reflux and the aspiration of stomach acid.
Hi profishopper, Has this worked for you? I haven't heard of it, but I'm very scared of trying anything else as I've had horrible reactions to so many things that the doctors and dietician have suggested. As long as my painful gastritis and vomiting symptoms are controlled by the huge doses of PPIs I think the rheumatologist just keep me on them. I'll definitely keep your suggestion in mind, though, and mention it at my next appointment. Thanks and good luck
My husband was taking Ranitidine, he had been taken off PPi because they were depleting his Magnesium, resulting in having to be hospitalized for infusions of Magnesium. Ranitidine was the next choice and generally worked well until it was withdrawn and no longer available. He was without medication for a few weeks and in pain until the Doctor came up with Famotidine. He has been on this mediation for a couple of months now and it has really made a difference.
I was diagnosed with Scleroderma about ten years ago and suffer badly with gastric problems I feel I have had that many procedures for this problem over the past five years as I feel at the moment I cannot face any more. I feel that although I am listened too no one has got a solution. I have a very good rheumy and I have discussed with him all my feelings about this problem and he understands my feelings.
This is just a dreadful disease, wish someone would find a cure.
Hi LindaI'm glad your husband has found something that helps him. I'm worried about taking so much PPIs, but si far my bloods have been ok.
My Scleraderma is mainly affecting my digestion at every level. I too wish there was a cure, but am resigned to trying to stay positive and to live as normally as possible. My diet is massively restricted so I can't eat out or imagine going on holidays. I have a good rheumy, but there's not much more she can offer at the moment. I'm really grateful for all the help and free drugs and for the NHS. I hope you get all the help you can. Take care x
Hi KatieAnna and Linda, I’m sorry you are having so much trouble with scleroderma gastric problems. I did look up Famotidine and it seems it works the same way as Ranitidine. It used to called Pepcid. I might try it at some point. I’ve now started a course of Co-amoxiclav but dreadful gut side effects. I wondered if the cure was as bad as the SIBO! I’m now taking Saccharomyces boulardii supplements spaced in between which is helping and making sure I take with food. There is no way I will last taking it for three weeks as my rheumatologist suggests though. I’m hoping to stick it out for two weeks.
I wish you all find something to help and thank you for your replies
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