Anyone on or have taken Motegrity?

Hi,

I am on Motegrity for gastroparesis and intestinal failure (lack of motility throughout my whole GI tract). And any medication I take makes it worse. Fortunately, I have had great luck with Motegrity-I see GI in Rochester (about 3 hours from my home), and they recommended this-as I didn't do well on Reglan and pretty much every OTC and prescription medication I have tried has either not worked or caused intolerable side effects.

The flip side is due to the expense, I have been on and off of it for 2 years due to insurance and/or lack of it. I have great insurance now, and will continue to have it, so I am back on it and it's going pretty well. And without the side effects of the other meds I have been on for this. With the gastroparesis I have been on nutrition support (tube feeds and TPN), so this has been a real blessing!

Hope this helps.

I just started motegrity a few days ago , so far so good. The reason I wanted to message you was your symptoms, I had the same I'm issues for several years , have you tried DAO enzymes? Since I started using them I have had zero headaches or migraines , heartburn nausea etc . Give it a shot if you haven't tried them .

After 2 months on Motegrity (generic for the past 5 weeks), I have started having bad dizziness every day that hampers normal activities. But this didn't start when I began with brand-name Motegrity. I take it with lots of water all day, and CALM, a magnesium oxide supplement powder, recommended by my gastroenterologist. I don't know if the dizziness is caused by Motegrity affecting my brain or if it is unrelated. I do not have positional vertigo (BPPV) but it feels like vertigo. I don't drink, either, but I feel like I did in my 20's after getting drunk. Not the brain fuzziness, just the unsteadiness. It also makes me feel nauseous. Motegrity has allowed me to have much less constipation, the first treatment to help, so I need to know if I should keep taking it or get off it. My gastroenterologist and his staff have too little experience with the drug to tell me one way or the other.

@tumblewind - I wanted to let you know I moved your post to this discussion so you could join in with others discussing the same topic about which you posted:

- Anyone on or have taken Motegrity? https://connect.mayoclinic.org/discussion/motegrity/

Since you mentioned your gastroenterologist and staff do not have a lot of experience with this drug, it makes sense to look to another authority who may have a longer history with it. Have you by chance asked the pharmacist who filled the prescription or the customer service line for the manufacturer?

@lisalucier Good idea

I am on Motegrity for chronic idiopathic constipation (CIC). It works very well for me. I take it right before bed, as far away from my last meal as possible. The side effects are "supposed"to fade away quickly...I combated the headache side effects by drinking a cup of coffee upon wakening, which helped tremedously. I found all of this advice from a patient forum online, not my MD:(. Also, I just learned that this medication causes the entire GI tract to contract, from stomach to colon (this my GI did tell me, yay!), which is a bit of a problem for me as I already have borderline rapid gastric emptying, but it is worth it to me. All in all it is a better fit for me compared with Linzess, which gave me more urgency and a feeling of fullness/bloating. Also, Motegrity is generic now. All the best!

@jlstjohn Your post is helpful. Are you taking any sort of stool softener as well? I changed from taking the generic Motegrity in the morning to the evening and it hasn’t worked for 6 days now. I’m hoping it helps again soon. Linzess was not great for the reasons you described but I might have to try that again. These meds are expensive but what can you do?

I was considering moving to another country for family reasons but I wonder if Motegrity or Linzess are available elsewhere and what the costs are. Really, this CIC is so bad that I worry about help away from my doctors here. On trips to the Netherlands and Croatia, where I was blocked for way too long, the ER doctors offered only our standard OTC laxative meds, baby-size enemas, and senna tea. Of course over the years those have all stopped working. If anyone lives in a country where they have similar issues, we’d like to hear. Thanks

@tumblewind I am not on a stool softener but a bunch of other OTC laxatives: senna, Miralax, and magnesium daily. I also have pelvic floor dysfunction that did not respond to physical therapy. I use a pelvic wand rectally every time I need to have a bowel movement and a soap suds enema daily to ensure things are being cleared out. My Gastroenterologist is aware of all of these modalities and has never discouraged me from using them. It definitely limits my lifestyle options, but I am still able to be here for my family, which they reassure me is enough. I would be surprised if Motegrity is not available overseas as so many meds come from India, etc...it may go by a slightly different name. For example, I just got my first Rx for Xifaxan through a Canadian pharmacy, but I got generic form (no generic is available currently in the USA).

@jlstjohn Thank you for taking the time to explain your routine. Sounds like you have been dealing with this longer than I. I'm surprised Senna works for you daily as it stopped working for me - or suddenly worked without warning to disastrous results (I was at a store with family!). Do you feel it needs the other supplements to work consistently? I will now look up a pelvic wand and soap suds enemas as those are new ideas for me. Best of luck on this journey. Hugs to you and your sweet family.

I have taken it at least two months.