Anyone have any experience with Reglan (for gastroparesis)?

[KimPM]

Does anyone have any experience taking Reglan? DH has been prescribed this by a GI doctor, after a bunch of tests verified that he has very slow digestion. It looks like it's just gastroparesis, ie. the digestive tract just not contracting as fast as it should. He is going to research the drug before deciding if he will take it. But we'd also like to know if anyone has any experience with this drug, or knows anyone who has taken it. Thanks in advance for any info!

[sbgrace]

Andrew was prescribed that for slow gastric emptying but I decided not to do it because of the risks of Tardive Dyskinesia. I know people do use it though and haven't had that effect/are happy with the response.

Does he have any other health issues? Sometimes gastroparesis goes w/other underlying conditions.

[balancedmama]

Reglan gives me horrible psych side effects. I have bowel issues, past bowel obstructions. Possibly due to MS.

[KimPM]

Originally Posted by sbgrace

Andrew was prescribed that for slow gastric emptying but I decided not to do it because of the risks of Tardive Dyskinesia. I know people do use it though and haven't had that effect/are happy with the response.

Does he have any other health issues? Sometimes gastroparesis goes w/other underlying conditions.

(There is some kind of digestive disorder thing that seems to run in his family. DH's father has serious digestive issues as well.)

DH doesn't take any prescription drugs, and hasn't had to before.

If you're talking about diabetes, DH doesn't appear to have diabetes. Every blood test where they've checked his glucose it's normal. However, one time I got him to test it using an old meter I had from when my cat was diabetic (strangely enough). His result was a bit high, but not in the diabetic range. As far as I know, he doesn't have any other health issues. Well, besides the food allergies/sensitivities. He's on a gluten-free, soy-free, vegetarian diet. Because of this digestion problem, he's got to be super careful about when he eats, and how much he eats, and not geting too much of either fat or protein, and what foods are combined together. Many days, he's lucky to even get two halfway decent "meals"...one of which being some kind of liquid shake (pea protein or ultimate meal kind of thing) because the liquid digests a bit easier. Let's just say he doesn't have an ounce of weight he can stand to lose.

My DH already tried some acupuncture, and unfortunately it didn't help. He was also doing the SCD diet for a bunch of months, and it didn't really help either, although it gave him some new food options. SCD was a challenge for him as a vegetarian, so he added eggs to his diet from that time until currently I guess. He also found that an almond-flour SCD legal bread works better than the gluten free grain based breads he was eating. The homemade SCD goat yogurt works okay for him as well.

Oh, and he's already using both supplementary HCl and digestive enzymes (been doing that for years now). And he's tried the bitter herbs thing too.

Anyway, as far as I can tell, Reglan seems to be for short-term use only. So, I guess it's supposed to have long-lasting/permanent effects? I don't know whether that's scarier or all the other risks. I didn't really like it when I looked it up. I'm sure he won't either. But I'm not sure what the alternative is, if there is any. I do know they can do a surgical implant of a device that stimulates the vagus nerve, kind of like a pacemaker does for the heart. But they probably don't like to do surgery until they have exhausted the drug options.

So what did you do for Andrew's slow gastric emptying then?

ETA: just saw the results of his gastric emptying test...22% at 1 hour, then NOTHING more at 2 hours. I think they only did a 2 hour test. I don't know what normal is, but it seems they wanted to see maybe 50% empty (at least) by 2 hours...? It seems weird to me that his digestion just stopped after an hour.

[sbgrace]

It turned out Andrew's slow emptying is due to an underlying mitochondrial disorder. When we started treating that condition he seemed to improve though we never saw GI again. That's why I mentioned that sometimes there is an underlying issue behind it all.

[KimPM]

Hmm, how do you test for a mito disorder? And then what is the treatment?

Thanks, and back to you. As you know, when it rains it pours.

[KimPM]

DH has just been looking at mito disorders online a bit...looks like MNGIE could explain the issues. So, who would he have to see to get tested? Would that be a geneticist, or can he just go back to his GI doctor for that?

[sbgrace]

Originally Posted by KimPM

DH has just been looking at mito disorders online a bit...looks like MNGIE could explain the issues. So, who would he have to see to get tested? Would that be a geneticist, or can he just go back to his GI doctor for that?

The thing about mito is that doctors are still very unaware in general (even though it's very likely the single most common metabolic condition). So you'd need to see someone who knows mito. Those someone's are few and in genetics or metabolics or sometimes neurology. It's even harder to find someone for adults. Where are you located? Feel free to pm me and I'll try to help you find where to go and get resources.
UMDF.org is a great source of information though I suspect he already found that site. Since he thinks he might know the actual disorder testing might be relatively easy if he goes to the right person (DNA test vs. the other testing mentioned on that site).

[~Adorkable~]

will read more her when i have a few minutes, i just wanted to chime in that i was told to take that by one doctor and told to do my research and be wary from another. i decided not to take because not only are a lot of the side effects really bad, but they are also pretty common, with some of the bad ones getting 30% of folks.
i have worked on my issues with diet and digestive assistant foods/supplements

will write and read more later

[KimPM]

Just wanted to post a follow-up, in case anyone has a similar experience and is wondering what happened. DH never took the Reglan (because of the possible severe and potentially permanent side effects). However, he did choose to try Erythromycin for a while (it was diagnostic). Since Erythromycin is a motilin agonist, it can stimulate peristalsis in the bowels, if that is the problem. It did indeed help somewhat for a short time. However, the effect seems to have worn off with increasing time on the medication.

On another front, he was tested for Lyme and just found out today that he was positive for borrelia (Lyme) and one other typical Lyme co-infection. So, if you have been diagnosed with *idiopathic* gastroparesis, you might consider getting checked out for Lyme.

Anyway, he is seeing a Lyme specialist for the diagnosis and treatment. (Not just any doctor understands all the specialized tests needed and supplements/medications needed.)

Hope that helps somebody else.

ETA - as far as the mito testing, he went through the first round of seeing the doctor - it took months of waiting even to get in to see her. However, we suspected Lyme in the process of waiting, so he decided to put off the expensive specialized mito testing for now.

ETA2 - The two infectious organisms he tested positive for are: borrelia burgdorferi (typical Lyme) and bartonella.

[KMK_Mama]

My DD was on Reglan when she was around 1. I don't remember how long she was on it but it was for a while in conjunction with Zantac for severe GERD. I guess it can have neurological side affects which after I found that out it made sense out of her falling down while crawling and walking when she was completely stable on her feet before starting the medication.

I'm glad you seem to have figured it out.