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Motegrity (Prucalopride) is finally available!


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#21 dac122

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Posted 03 October 2019 - 03:35 PM

Jumping on this thread to report I have been on Motegrity for almost a week now, 2MG tablets.  

 

On day one I did get diarrhea in the morning and a pretty intense headache, improving appetite, little gas or bloating.    Day two onward no more diarrhea, little headache, strong appetite, little gas or bloating.  The only actual complaint I have is my appetite - I am unbelievably hungry, famished, a lot of the time.  It is great having a strong appetite like I used to but this is overkill.  I might ask to try 1MG tablets.

 

Anyone know if I can split the tablet?

 

It likewise required a prior authorization, but that went through. I too was shocked to find my copay was only $15.  

 

All in all, I am pretty happy with it.  



#22 annie7

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Posted 03 October 2019 - 04:23 PM

thanks for the update--so glad it's helping you!


these are just my own thoughts. for expert medical advice please contact a health care professional.


#23 aries_wmn

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Posted 03 October 2019 - 08:33 PM

I've heard of people who take low doses buying 2mg and splitting it to save money, so I think it's safe to try splitting your dose.

Jumping on this thread to report I have been on Motegrity for almost a week now, 2MG tablets.  

 

On day one I did get diarrhea in the morning and a pretty intense headache, improving appetite, little gas or bloating.    Day two onward no more diarrhea, little headache, strong appetite, little gas or bloating.  The only actual complaint I have is my appetite - I am unbelievably hungry, famished, a lot of the time.  It is great having a strong appetite like I used to but this is overkill.  I might ask to try 1MG tablets.

 

Anyone know if I can split the tablet?

 

It likewise required a prior authorization, but that went through. I too was shocked to find my copay was only $15.  

 

All in all, I am pretty happy with it.  



#24 Robtibs

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Posted 04 October 2019 - 07:33 AM

Im paying cash. Any idea of actual cost?

#25 annie7

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Posted 04 October 2019 - 07:37 AM

you could call your pharmacy and ask them the cost  or look it up on the "GoodRX" website:

 

 

     https://www.goodrx.com/motegrity


these are just my own thoughts. for expert medical advice please contact a health care professional.


#26 dac122

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Posted 04 October 2019 - 09:25 AM

I've heard of people who take low doses buying 2mg and splitting it to save money, so I think it's safe to try splitting your dose.

 

Thanks for that info!  First I want to see how I do for 30 days before monkeying around.  My appetite might normalize. 

 

Even if my appetite normalizes, it is always best to be on the minimum effective dose, IMO.  



#27 dac122

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Posted 12 October 2019 - 12:43 PM

I wanted to post another update just in case this helps someone, since my dr didn't mention this.

 

I've noticed that I get better results with Motegrity when I take it after a 4 hour fast, before bed, as recommended by Dr. Pimental an IBS researcher at Cedars-Sinai. It's important to note that this includes not taking it at the same time as other laxatives or other medications..  It's weird that taking it at the same time as magnesium reduces it's effectiveness, but for me it definitely does. Pimental also said on Twitter that the fast is important, but if you can't manage a 4 hours fast 2-3 hours can be helpful.  I still take some form of magnesium, but I take it earlier in the day.

 

It is a bit annoying to follow these rules, since I"ve always found it most convenient to take laxatives before bed, but it's been worth it. 

 

I do get milder improvement from Motegrity when not following these rules, so I imagine if you have less severe symptoms this may not be as important.

 

I've been on Motegrity for two weeks now.  First week it worked great.  After week two, there is a reduction in its effectiveness.  I take it around 11 AM usually an hour or less after my last snack or meal.  I will try this in the evening when my last meal is around 7 PM and hit the sack around 11 PM.  

 

Did your Doc explain why the fast helps?  And why taking with other things, such as magnesium specifically, decreases effectiveness?

 

Also, and just curious, any limitation on eating after taking?

 

This is interesting since the literature says you can take with or without food.



#28 annie7

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Posted 12 October 2019 - 01:38 PM

 

I've been on Motegrity for two weeks now.  First week it worked great.  After week two, there is a reduction in its effectiveness. 

 

 

so sorry motegrity isn't working as well as it was.

 

if following the above rules doesn't help, you might want to try taking a bit of a drug holiday from it.  that might jump start it into working again.

 

motegrity and zelnorm are a lot alike in that they are both 5-HT4 receptor agonists so following the protocol below might help in getting it to work again.

 

back in the day when i was taking zelnorm the same thing happened to me that happened to you with motegrity.   it worked quite well the day i started taking it.  but by the end of the week it wasn't working much at all.  my body seemed to have built up a tolerance to it rather quickly.  so i played around with it and  started taking it every other day plus i didn't take it at all on the weekends and took an occasional week long drug holiday from it every month or so.   that protocol kept it working for me.  other people here on the board had the same experience i did.

 

good luck with everything.  hope you can get motegrity to work for you again. 


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#29 aries_wmn

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Posted 12 October 2019 - 03:32 PM

 

I've been on Motegrity for two weeks now.  First week it worked great.  After week two, there is a reduction in its effectiveness.  I take it around 11 AM usually an hour or less after my last snack or meal.  I will try this in the evening when my last meal is around 7 PM and hit the sack around 11 PM.  

 

Did your Doc explain why the fast helps?  And why taking with other things, such as magnesium specifically, decreases effectiveness?

 

Also, and just curious, any limitation on eating after taking?

 

This is interesting since the literature says you can take with or without food.

Unfortunately he's not my doctor but a well known IBS doctors/researcher. My understanding is that prokinetics like Motegrity trigger the migrating motor complex (https://en.wikipedia...g_motor_complex) which moves food through the body.  The body has to be in a fasting state for the MMC to be activated. So it's not magnesium specifically that makes it less effective.  Taking it at the same time as anything that has to be digested would make it less effective. I hope taking it at night helps, and if that doesn't help, I hope Annie's suggestion does.



#30 dac122

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Posted 12 October 2019 - 07:45 PM

Unfortunately he's not my doctor but a well known IBS doctors/researcher. My understanding is that prokinetics like Motegrity trigger the migrating motor complex (https://en.wikipedia...g_motor_complex) which moves food through the body.  The body has to be in a fasting state for the MMC to be activated. So it's not magnesium specifically that makes it less effective.  Taking it at the same time as anything that has to be digested would make it less effective. I hope taking it at night helps, and if that doesn't help, I hope Annie's suggestion does.

 

Thanks and that makes sense.  I can't completely tell, but I think if I haven't eaten for a while and then don't eat for a while afterwards, Motegrity seems to work better.  Again, can't quite tell but this must be the MMC kicking in (I get the gurgling stomach sounds and accompanying appetite)

 

I found this article about Dr. Pimentel, MMC, Motegrity, SIBO that backs up what you are saying and goes into further detail.  To maximize Motegrity effects, the rules appear to be:

  • Fast as long as you can before taking med
  • Fast as long as you can after taking med
  • Stick to a strict 3 meal per day regimen; no snacking (like Mom used to say)

This gives MMC the greatest chance to work, and to work the longest, possibly with numerous cycles.  Does that sound correct?

 

If true this literally contradicts Motegrity's use instructions.  

 

Does anyone know if drinking water interferes with MMC?



#31 aries_wmn

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Posted 12 October 2019 - 09:55 PM

 

Thanks and that makes sense.  I can't completely tell, but I think if I haven't eaten for a while and then don't eat for a while afterwards, Motegrity seems to work better.  Again, can't quite tell but this must be the MMC kicking in (I get the gurgling stomach sounds and accompanying appetite)

 

I found this article about Dr. Pimentel, MMC, Motegrity, SIBO that backs up what you are saying and goes into further detail.  To maximize Motegrity effects, the rules appear to be:

  • Fast as long as you can before taking med
  • Fast as long as you can after taking med
  • Stick to a strict 3 meal per day regimen; no snacking (like Mom used to say)

This gives MMC the greatest chance to work, and to work the longest, possibly with numerous cycles.  Does that sound correct?

 

If true this literally contradicts Motegrity's use instructions.  

 

Does anyone know if drinking water interferes with MMC?

I've read that article too, and I've noticed he says ". I take the pill >4 hours after my last bite of food, and then fast completely for the next 12 hours (no pills, no vitamins, no coffee, nothing except water)"

 

Your understanding is the same as mine, except I don't think there's an advantage to fasting more than four hours before taking it.


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#32 dac122

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Posted 14 October 2019 - 12:12 PM

I've read that article too, and I've noticed he says ". I take the pill >4 hours after my last bite of food, and then fast completely for the next 12 hours (no pills, no vitamins, no coffee, nothing except water)"

 

Your understanding is the same as mine, except I don't think there's an advantage to fasting more than four hours before taking it.

 

Agreed!  I would add fasting that long and then waiting 12 hours seems impractical.  



#33 aries_wmn

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Posted 18 October 2019 - 05:45 PM

so sorry motegrity isn't working as well as it was.

 

if following the above rules doesn't help, you might want to try taking a bit of a drug holiday from it.  that might jump start it into working again.

 

motegrity and zelnorm are a lot alike in that they are both 5-HT4 receptor agonists so following the protocol below might help in getting it to work again.

 

back in the day when i was taking zelnorm the same thing happened to me that happened to you with motegrity.   it worked quite well the day i started taking it.  but by the end of the week it wasn't working much at all.  my body seemed to have built up a tolerance to it rather quickly.  so i played around with it and  started taking it every other day plus i didn't take it at all on the weekends and took an occasional week long drug holiday from it every month or so.   that protocol kept it working for me.  other people here on the board had the same experience i did.

 

good luck with everything.  hope you can get motegrity to work for you again. 

I'm glad you posted this...I've been in terrible shape since Monday despite taking stimulant laxatives early in the day and Motegrity at night...I skipped my dose for a day and then took it again last night, and was drastically better today, way less pain and no bloating. I guess I'll have to try using it every other day and see how it goes. I wonder how I'll feel tomorrow, after skipping the dose again tonight.



#34 MarciaDS

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Posted 21 October 2019 - 05:18 PM

I just started on zelnorm, which is similar to motegrity , correct? If I try a similar schedule, Ill have issues with other medications. I can take it first thing in the morning, but I have tea or coffee. I also have to take zelnorm twice a day. If I take at 7pm it is not on empty stomach. Plus I take a medication to help me sleep, around 10pm. I have just started taking miralax daily, when is best to take that?
I think Ill just stop eating.

#35 annie7

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Posted 22 October 2019 - 07:48 AM

yes, you're right--zelnorm is similar to motegrity.

 

back in the day when i took zelnorm, i just took it as prescribed--on an empty stomach 30 minutes before eating breakfast.   i did find that taking 12 mg (2 pills) in the morning instead of 6 mg in the am and 6 mg in the pm worked a lot  better for me.  of course, you might want to clear this with your doc before taking it like this. 


these are just my own thoughts. for expert medical advice please contact a health care professional.


#36 comptalk

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Posted 06 November 2019 - 11:37 AM

I finally got the RX, and I cut the 2mg tablet in half, and I take it every other day. It seems to work so far, but I get this massive headache that doesn't go away.  I first tried to tumeric, but no luck.  I then had to resort to a Naproxen since I was afraid it would turn into a full blown migraine.  As many of you know, Naproxen causes constipation, so feel like I am in a never ending battle between my digestive system and my head.

 

Any suggestions? I cannot win it seems.  Not even trying to win, just to have a someone normal life.



#37 dac122

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Posted 06 November 2019 - 11:54 AM

I finally got the RX, and I cut the 2mg tablet in half, and I take it every other day. It seems to work so far, but I get this massive headache that doesn't go away.  I first tried to tumeric, but no luck.  I then had to resort to a Naproxen since I was afraid it would turn into a full blown migraine.  As many of you know, Naproxen causes constipation, so feel like I am in a never ending battle between my digestive system and my head.

 

Any suggestions? I cannot win it seems.  Not even trying to win, just to have a someone normal life.

 

I recall the headache but it went away after a few days on Motegrity.  If it has been only a few days, give it more time.  How long have you been taking?



#38 comptalk

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Posted 06 November 2019 - 12:50 PM

 

I recall the headache but it went away after a few days on Motegrity.  If it has been only a few days, give it more time.  How long have you been taking?

 

Only took a half yesterday, but skipping today as the pill was pretty effective in a couple of hours. Firmed up today, but still easy to pass.  Sorry if it is TMI. My only complaint is the headache.  I had to take something today as it was a 24 hour headache and I was concerned it would break into a 72 hour migraine or even worse a cluster.  I usually get 3 - 5 migraines a month (with botox and aimovig), so I know it wasn't a migraine, but was concerned. Once they start, if one doesn't catch it fast enough in the predome, then it's either 72 hours of hell or a very expensive trip to the ER for anti-nausea meds and a few injections of dilaudid. It's a balancing act. 



#39 dac122

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Posted 07 November 2019 - 03:52 PM

 

Thanks and that makes sense.  I can't completely tell, but I think if I haven't eaten for a while and then don't eat for a while afterwards, Motegrity seems to work better.  Again, can't quite tell but this must be the MMC kicking in (I get the gurgling stomach sounds and accompanying appetite)

 

I found this article about Dr. Pimentel, MMC, Motegrity, SIBO that backs up what you are saying and goes into further detail.  To maximize Motegrity effects, the rules appear to be:

  • Fast as long as you can before taking med
  • Fast as long as you can after taking med
  • Stick to a strict 3 meal per day regimen; no snacking (like Mom used to say)

This gives MMC the greatest chance to work, and to work the longest, possibly with numerous cycles.  Does that sound correct?

 

If true this literally contradicts Motegrity's use instructions.  

 

Does anyone know if drinking water interferes with MMC?

 

Reporting back here this approach works to maximize Motegrity effects. 

To restate:

  • Fast as long as you can before taking med
  • Fast as long as you can after taking med
  • Stick to a strict 3 meal per day regimen; no snacking (like Mom used to say)

For me this means not eating after dinner (6 to 7 PM) and taking Motegrity at bedtime (10 to 11).  Next morning, on works days, I don't eat until at least 7 AM; weekends even later.  Lunch is around 12 noon.  I try not snacking between meals.  

 

Hope this helps.  



#40 GJMody

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Posted 08 November 2019 - 06:33 AM

Is motegrity working for everybody?





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