Metroclopramide for SIBO related Scleroderma

[Halfwayuphill]

Hello there, I an struggling with gut related problems which have worsened in recent two years. I’m taking antibiotics often with only couple of weeks gap but I’m now getting oesophical spasms and not sure if my ppi is strong enough. I’m waiting at last for a face to face appointment at the Royal Free in May but in the meantime my gp has suggested Metroclopramide for the spasms as it could be gases from the SIBO in my oesophagus. From a recent endoscopy it looks like I have gastropraisis and I wondered if this drug would help this. I think I have Vegus nerve involvement as pain is dreadful at times especially when my digestion is ‘limbering up’! Any advice appreciated

[OldTed60]

I have Gastroparesis but think I’m also getting SIBO as very bad with pain and flatulence now. I tried Metoclopramide when I was same stage as yourself. But read the side effects were neurological and had this mini seizure once with another anti emetic so only took it for few weeks - didn’t seem to do much anyway. Then spoke to the GP pharmacist and explained so they gave me Domperidone instead. This has made a huge difference to me - I take 3 daily and have restricted soft low fodmap diet with nutritional liquid supplement.

[Halfwayuphill in reply to OldTed60]

Hi Old Ted. I saw your post on gut noises and thought your story was similar to mine. I didn’t have a chance to reply as away at the time but wondered if you’d see this. I have had from time to time gurgling noises in my gut but not that often. I have developed at the same time as my SIBO symptoms prolapse (my uterus but not colon as you), and urine retention. It was Professor Denton who suggested SIBO to me and I’ve since had a breath test to confirm. I’ve had Rnp positive UCTD with choking /reflux for years but they think I have limited Scleroderma now and it’s caused the prolapse etc. Do you have weight loss? Mine is terrible despite antibiotics.

Thank you for replying re the Metoclopramide. I’m a bit nervous of taking it as I saw the nervous system problems it can cause. I think I will wait for other replies and possibly speak to my doctor re Domperidone as I’ve just noticed SRUK mention it.

[Poppy221]

I have limited scleroderma with stomach and intestine involvement and PAH. Domperidone was the second medication I was given by rheumatology - my stomach was choosing to randomly not empty. Some days fine, other days three to five hours of feeling like it was fermenting and then mega-spew after which I'd feel rather better - and it was not dependant on what I'd eaten - some days a particular meal caused no problems, other days up it came. Domperidone stopped that - 2 a day is what I am on. I have had maybe two instances of vomiting in two years since I went on it. One was due to eating too late in the evening - family event and I couldn't control the timing - the other was a surprise with no reason I can think of. These days I am eating a high fibre diet with cheese, milk and eggs included. I do need to be careful to take the domperidone at least half an hour before a meal and also to leave at least three hours after supper before going to bed.

[Halfwayuphill]

Thank you Poppy. Luckily I haven’t vomited with this just nausea extreme weakness and pain darting everywhere. I have read some more posts regarding pro kinetics and it appears it’s better to take after antibiotics so I’m wondering if I should just up my Lansoprazole (I take 15mg twice daily) for the spasms and try one of these prokinetics after the antibiotics. I do think I’m leaving it too late to take them sometimes and now paying price. It was a month ago I had a course of Rifaximin. I also have Diverticulitis and roughage seems to upset me. You can’t win!

[Sophiebun11]

Hi,

I too take Metoclopramide as did one of my bunnies. Initially I was started on Omeprazole but it contributed to my Stage 4 kidney disease also related to Ssc. I think the Omeprazole worked better for me.

Good luck to you.

[Halfwayuphill in reply to Sophiebun11]

Thank you Sophie. I’m actually on Lansoprazole (15mg twice a day) which my gastroenterologist gave me instead of omeprazole (20mg). He prescribed it after I started getting spasms again and coughing more at night. I don’t think it’s made that much difference and sometimes I feel it sticks in my oesophagus as the little granules go down. I may have been better with a stronger omeprazole.

[Poppy221]

I'm on esomeprasole max dose - some years back was given omeprazole for an unrelated problem and it made me feel like hell - before I had systemic sclerosis. Just mentioning this as sometimes it can be worth trying an alternative medication for a problem - I seem to remember being offered a choice of 3 different PPI by the GP from which I chose esomeprazole for the simple reason it was more relaxed about when you took it.

For completeness I don't have any bacterial involvement in my stomach problems, it is "just" slow peristalsis, acid reflux and slow stomach emptying. I think my stomach has got fairly robust these days - or at any rate it copes with my favourite really stinky cheese, high fibre things, oranges. Not so keen on pickles. Tried kefir the other month which added some gurgling for a day or so, but otherwise fine - apart from the flavour. Not trying kefir ever again.

[Halfwayuphill in reply to Poppy221]

Thanks Poppy, that’s great to hear it has improved. I think my illness has had phases in the past but then improved. I do seem to be on a downward spiral for quite a while now though but I live in hope! I’ll also mention possibly changing my ppi at my royal free appointment. I’ve also got quite severe osteoporosis and have tried to get get off a ppi in the past, probably not helped.

[Hidden]

SIBO can be helped a lot with nutrition / lifestyle input. Have you thought about seeing a nutritionist? Good gut health will also help to stabilise your immune system so you may see other benefits as well as improved gut symptoms. Xx

[Halfwayuphill in reply to Hidden]

Hi Lizzy, yes I have seen a nutritionist and a herbalist who had trained in Functional Medicine. Didn’t really get anywhere as the nutritionist put me on a sort of FODMAP diet but including sourdough as I’ve lost so much weight and it allowed oats. The Herbalist did get me to test properly for SIBO (I was waiting for a NHS test and taking ages) and I got a positive result. She too put me on a better FODMAP type diet but again including Sourdough but tried to treat the SIBO with herbs (Neem) which never worked and I kept getting awful reactions to other things she tried. I gave up in the end not least because it was expensive. I noticed Dr Elizabeth Volkmann in her SRUK webinar mentioned seeing a naturopath experienced in Scleroderma but it’s difficult to find someone. Thank you for your message

Sue