Pentasa for LAR Syndrome

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chrisca
Posts: 233
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Pentasa for LAR Syndrome

Postby chrisca » Tue Feb 06, 2018 5:25 pm

I've done a lot of experimenting with drugs to treat LAR syndrome. After quite a long search, I'm finding that Pentasa has some promise. It's an extended-release capsule with mesalamine as the active drug. Lower doses seem to work better. I've tried 800 mg generic coated caplets and it was too strong, producing constipation. Then I tried the 250 mg extended-release brand name capsule. It was still a bit too strong, so I'm now taking the capsule apart and mixing half of it with applesauce after the evening meal. The suppositories weren't useful as they produced leakage.

I found that larger doses produced both constipation and some nausea. I'm hoping that the 125 mg is the sweet spot. The drug calms down bowel contractions and tends to improve stool formation, reducing fragmentation and producing more normal stools. This has a big benefit in reducing cramping, rectal irritation, and hemorrhoids. Not everyone may experience the nausea, so a higher dose may work for some. It also produces a more settled feeling throughout the day, meaning less of a feeling of urgency except right after a meal.

This could be worth exploring with your GI specialist if you're looking for some relief from LAR syndrome. If anyone has tried it or plans to, please post back here with your findings. There seems to be no literature on it for this use.

-Chris.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 6 years

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O Stoma Mia
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Re: Pentasa for LAR Syndrome

Postby O Stoma Mia » Tue Feb 06, 2018 11:12 pm

chrisca wrote:...If anyone has tried it or plans to, please post back here with your findings. There seems to be no literature on it for this use. .

This appears to be a prescription drug designed specifically for Chron's disease. There's quite a lot of information about its use with Chron's disease, but not much related specifically to LARS.

So, if we want to try it we have to get a prescription for off-label use for CRC ? Is that how it works?

What does your GI doctor think about this idea?

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chrisca
Posts: 233
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Pentasa for LAR Syndrome

Postby chrisca » Thu Feb 08, 2018 1:59 pm

O Stoma Mia wrote:
chrisca wrote:...If anyone has tried it or plans to, please post back here with your findings. There seems to be no literature on it for this use. .

This appears to be a prescription drug designed specifically for Chron's disease. There's quite a lot of information about its use with Chron's disease, but not much related specifically to LARS.

So, if we want to try it we have to get a prescription for off-label use for CRC ? Is that how it works?

What does your GI doctor think about this idea?


Yes, my GI doc prescribed it off-label. The most common uses are for Crohn's and IBS. It's a fairly benign drug and has few serious side effects reported. People with kidney problems should use with caution. The only things I've noted personally are some constipation if the dose is too high, and nausea. Since I've been splitting the capsules the nausea has not happened. I'm not ready to declare victory yet, but the results so far are promising.

-Chris.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 6 years

User avatar
chrisca
Posts: 233
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Pentasa for LAR Syndrome

Postby chrisca » Sun Feb 18, 2018 2:42 pm

Since my last post, I've been taking the 125 mg dose once a day after dinner. No nausea, and I'd say there is about a 20 to 30% improvement in stool caliber and length, meaning there is less effort required to "finish up" the BM. For anyone trying to start the drug, I'd say to give it a week or so to kick in, and to reduce the dose if constipation occurs. With LAR syndrome, if one gets "backed up" the bowel can get quite angry for a day or two afterward. You have to be willing to experiment to find a dose that produces some gentle calming without causing too much stretching of the bowel and irritability. It's not a miracle, but a welcome improvement. For some with a more serious case than I've got, it could make more of a difference.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 6 years

User avatar
O Stoma Mia
Posts: 1424
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: Pentasa for LAR Syndrome

Postby O Stoma Mia » Thu Feb 22, 2018 1:58 pm

chrisca wrote:...
If anyone has tried it or plans to, please post back here with your findings...

I saw my GP today and asked about a Pentasa prescription. He recommended against it, citing the co-morbitities that I currently have. He claimed that, in my case, it may do me more harm than good.


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