Hello , I have recently been prescribed a short term course of Erythromycin to treat my Gastroparesis to see if it is better than metoclopramide at moving things through my intestines . I was wondering if anyone else has been prescribed this and if so does it work and what side effects do you get?
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Has anyone been prescribed Erythromycin to treat gastroparesis?
- Thread starter Michael47
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Hi AJ Lang, thanks for your reply. So the erythromycin has worked for you then? Can you tell me what dose you are on, and if you take it before meals ? I was prescribed 500 mg of erythromycin 4 times daily and the pain the next day was pretty severe in my abdomen. Have had to call paramedics twice and was admitted as an emergency for one day to check for other things , have bloods taken etc, all of which didn't really show much. Am taking a half dose at the moment which is less trouble some but still not sure it is helping. I have been a fairly well controlled diabetic for 47 years so in theory should not really be getting these problems , though as you get older who knows...
AJLang
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Hi Michael I’m sorry that you’ve been in so much pain. I think my prescribed dose of erythromycin is the same as yours but mine is the liquid form and to have it 30 minutes before eating to help the digestion of food. The pain you describe could very much be caused by the gastroparesis itself. The medication on its own is not enough for gastroparesis it should be accompanied by recommended dietary changes. For gastroparesis this is six small snack meals a day (not large meals) and the food should be low fat and low fibre. I started with this and over time experimented with what I cold and couldn’t eat. often I get it right but sometimes I get it wrong and really suffer as a result. Some days I can’t each much at all but on an average day I can have 2-3 snack meals and a reasonable dinner but it really is trial and error. One of the key things for me is to keep my HBA1C around 6.5 but this is incredibly difficult and I couldn’t do it without my insulin pump and frequent checks and corrections. I’ve been told that due to the erratic impact of gastroparesis on BG levels most diabetics with gastroparesis don’t get an HBA1C Below 8.5
I was diagnosed with gastroparesis after 39 years of Type 1 diabetes and my average HBA1C for the ten years prior to diagnosis was 7.5.
unfortunately it can purely be the length of time Diabetes that causes complications however good your control.
Has the hospital done a gastric emptying study test to confirm that it is gastroparesis. I understand that is the key test to have.
I was diagnosed with gastroparesis after 39 years of Type 1 diabetes and my average HBA1C for the ten years prior to diagnosis was 7.5.
unfortunately it can purely be the length of time Diabetes that causes complications however good your control.
Has the hospital done a gastric emptying study test to confirm that it is gastroparesis. I understand that is the key test to have.
Hi A J , thanks again for all your advice. No I have not had a test to actually confirm the gastroparesis . It was assumed by my GP that I had it based on symptoms, and was put onto metoclopramide , which seemed to do the trick for a while but I still got episodes of bloating , fullness and slight nausea occasionally. I have already started experimenting with meal sizes , particularly recently when I haven't been able to eat much. I have always been advised to increase fibre but that clearly was wrong. One thing I have noticed is that I get conflicting advice from different medics which is unhelpful. I am particularly frustrated by the lack of input from my diabetic team, especially recently. It looks like our timings are very similar. I was diagnosed with suspected gastroparesis after about 36 years of being diabetic. My last HBA1C was 6.1 . it has been as low as 5.5 and was as high as about 6.9 to 7.7 eight years ago. I am not on an insulin pump , but find that the freestyle libre system is a real help in controlling it . Can I ask why you take erythromycin as a liquid and not tablets?and also if you also take any metaclopramide. I have also been informed that I may have small intestinal bacterial overgrowth as a complication , which I am hoping to be tested for in the next few weeks. Of course with the pressures on the NHS all these things take time to get diagnosed. Thanks again for your insight, this is very helpful to me.
Hi , another question I meant to ask was , have you been advised to take erythromycin before bed or during the night? thanks again.
AJLang
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Hi Michael I’m afraid that from my experience it is not possible to completely eradicate these symptoms. The goal is to make sure that you have enough nutrition and can keep that absorbed. I was prescribed liquid erythromycin so that it is absorbed more quickly when my food isn’t digesting enough but it is a lot more expensive than the tablets. The gastric emptying study showed that my gastroparesis is severe - it can be in a range from mild severe. If I eat more than a snack It can take 6-12 hours for my food to digest with associated effects on blood sugar and how I feel. I only have the erythromycin before I eat or if I’m feeling particularly bad from an earlier meal - but this is personal to me from trial and error and we are not allowed to give any medical advice on this forum. I also have domperidone four times a day BUT THIS IS NO LONGER RECOMMENDED BECAUSE OF THE HIGH RISK OF HEART PROBLEMS WITH DOMPERIDONE. But because I was on it. before the warnings and because I couldn’t eat without it my diabetic consultant has allowed me to continue with it whilst I accept the consequences about what it could do to my heart on the proviso that I have fairly regularly ECGs to check that it isn’t affecting my heart.
I was lucky that my diabetic consultant at the time referred me to a specialist in diabetes gastroparesis at a large hospital. She warned me after five years of gastroparesis that I could end up only being able to eat puréed food or liquids. Fortunately everything’s still going ok but it is progressing and I do spend a large part of each day either feeling bloated in my upper stomach, nauseous and with the unpredictable blood sugars. But despite that I have a great life.
I’m also lucky that four or five years ago the new consultant at my local hospital specialises in diabetic gastroparesis and has had a paper on it published by the British Medical Journal although by the time she arrived I’d worked it out myself.
Leadinglights
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It does seem strange that an antibiotic is something which is a helpful treatment for gastroparesis, I wonder what the mechanism is that makes it work.
It is apparently a side effect which wasn't known of at first. It stimulates smooth muscle contractions in the gastrointestinal tract. I was just wondering if it works well and if there any unwelcome side effects. I have only been on it for one week so far as part of a short course to see if it works in me. So far I am not sure . I have been on metaclopramide for some time , which apparently can have bad side effects after time. Also I have been getting gradually worse recently.
Cheesecake
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I was diagnosed with gastroparesis a few years ago, I haven’t tried erythromycin (mainly because no one has suggested it) but I have heard of others with non diabetes related gut issues using it and it’s been positive, overall. It’s kinda like a reset I believe? I’m intrigued you’ve not had the delayed gastric emptying test, have you had a blood test for coeliacs? We went through lots of things before we got to gastroparesis, IBS was one.
I was taking metoclopramide and ondansetron but have now stopped these as I started another medication (for something else) and was advised to.
What I’ve really found that worked is looking at my diet. My diabetes team said about the 6 small meals, but I’ve never felt that’s worked for me. My gastro said to try dairy free, gluten free and/or low FODMAP, which I’ve done at varying degrees the last few years. It’s so hard as it’s the opposite thing for each condition. Low FODMAP really helped reset me and get everything moving and comfortable again, and I’ve slowly introduced things again. Alcohol is also on the “bad” list.
I’ve also found intermittent fasting is helpful, I often feel too full to eat 3 meals a day. I am borderline underweight so I do worry about calories, but at least what I’m eating isn’t being vomited back up, so I count that as a win! I’m looking into a low carb diet for diabetes as I want to improve my Hba1, this will be kinda be gluten free as a side effect.
Ive felt really alone with all of this, there doesn’t seem to be a cohesive approach. I’ve been told it’s not progressive for example.
I was taking metoclopramide and ondansetron but have now stopped these as I started another medication (for something else) and was advised to.
What I’ve really found that worked is looking at my diet. My diabetes team said about the 6 small meals, but I’ve never felt that’s worked for me. My gastro said to try dairy free, gluten free and/or low FODMAP, which I’ve done at varying degrees the last few years. It’s so hard as it’s the opposite thing for each condition. Low FODMAP really helped reset me and get everything moving and comfortable again, and I’ve slowly introduced things again. Alcohol is also on the “bad” list.
I’ve also found intermittent fasting is helpful, I often feel too full to eat 3 meals a day. I am borderline underweight so I do worry about calories, but at least what I’m eating isn’t being vomited back up, so I count that as a win! I’m looking into a low carb diet for diabetes as I want to improve my Hba1, this will be kinda be gluten free as a side effect.
Ive felt really alone with all of this, there doesn’t seem to be a cohesive approach. I’ve been told it’s not progressive for example.
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Sounds like you‘ve put a lot of effort into your own experimentation @Cheesecake, and have found a system that works well for you.
Sorry that you’ve not felt very supported by your clinic. Gastroparesis does seem to be one of the complications of diabetes for which there aren’t really many treatment options. And most of the options aren’t very effective unfortunately
Sorry that you’ve not felt very supported by your clinic. Gastroparesis does seem to be one of the complications of diabetes for which there aren’t really many treatment options. And most of the options aren’t very effective unfortunately
jaitkenhead
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How do you know if you do have gastroparesis? Is it acid reflux, feeling a bit full after meals or more serious symptoms than that?
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There are other symptoms including nausea, vomiting and loss of appetite listed here
Gastroparesis
Find out about gastroparesis, including what the symptoms are, what the treatments are, how it's diagnosed, and what causes it.
www.nhs.uk
I think there are confirmatory tests that can be run too.
@AJLang may know?
AJLang
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The key test for gastroparesis is a gastric emptying study which measures the rate at which you digest food.
A key problem with diabetic gastroparesis is that it can make your blood sugars VERY erratic. For example going hypo within 1-2 hours of eating a meal that has been bolused for and then climbing high a few hours later.
A key problem with diabetic gastroparesis is that it can make your blood sugars VERY erratic. For example going hypo within 1-2 hours of eating a meal that has been bolused for and then climbing high a few hours later.
jaitkenhead
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useful to know thank you
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