Linaclotide - a potential saviour for IBS-C sufferers?

[mace6]

I'm a male who is 45 and have suffered with IBS-C with severe, constant bloating for more years than I can now remember. It had become so bad in the last two years that I could count the good days in a month on one hand.

My Gastro finally prescribed Linaclotide 290mg per day. I'd never heard of it beforehand.

At first, it was a mini marvel - until it appeared to stop working after a few weeks, much to my dismay.

However, after extensive research, I've discovered that since refrigerating the capsules and administering one within an hour before eating a reasonably high fat meal, they've been as good as day 1. I go within an hour, 9/10 times.

Admittedly, emptying my bowels resembles Niagara Falls but it's a fantastic feeling in comparison to chronic constipation and vile laxatives - which only served to make my painful IBS symptoms 10 times worse.

I've now been on Linoclotide for 5 months. I no longer look 9 months pregnant and am no longer shattered and bed ridden every other day.

It's not a cure, I still can't tolerate fruit or veg and, consequentially, still have to take supplements, but this is the only medication I've taken that has genuinely helped over the long term.

Nowadays, I can count the bad days on one hand. For me, that's a miracle.

[Amb194]

I'm currently on day 4 of taking the 290 linaclotide tablets, again same response gone from severe constipation to going within an hour of taking the medication which is much better I guess than the feeling of bloatedness. I saw my gp this morning as I'm still in a lot of stomach and back pain and have started being sick too. Apparently these are side effects of the medication, also told me the pain will go in time I need to give the tablets atleast 4 weeks to do their job.

My gastroenterologist also recommended a fodmap which I'm following dont know if this is something you've heard of you could try? Also do so with the advice from a doctor first!

IBS is a joke. Not enough research or medication available I feel at all.

[Stuart24]

This is a good step forward and a great incentive for hope for IBS-C sufferers. Thanks for sharing.

[Virgo67f]

I’m also on Linaclotide taking 290mg twice a day.

Consultant has also now added picolax to my daily meds.

The concoction is great when it works but trying to balance that plus a full time job etc isn’t easy.

I’ll need to try your tip about fatty foods etc. Thanks!

[Readmeastory]

Hi I'm on this tablet as well I've been on it 3months . It worked great but at the start but now nots so good . I was told to take on a empty stomach so I take it in the morning . But dietian put me on high fibre diet and then low fibre diet . But nothing seems to get it right . I'm 64 old woman and just being diagnosed 7months ago with slow track bowel and ibs -c . But like you sometimes the bloating and pain is do severe you can't go anywhere . But I've never been told to put them in the fridge . My consultant told me nothing he could do to help just trial and error over meds and diet . So trying different things to see what helps .

[xjrs]

I have been on Lincalotide 290mcg for 8 weeks now. I've tried taking it before a fat containing meal, but it doesn't help with my BMs. Initially it gave me hyperactive motility but didn't soften my stools so I'd be running to the loo finding it difficult to pass the hard stools and then getting overflow. That has now settled and I have to pair it with Magnesium Oxide to get a BM. For me, the one thing it has helped with is the pain - to a degree. I have been introducing new foods, but progress has been hampered by the pain increasing - though sometimes I'm not sure if it's the food or backed up stool getting on the move again since I have to keep adjusting the Magnesium Oxide dose as I increase fibre. I have posted a question to my gastroenterologist as to whether to try to double the dose (apparently this doesn't give double the relief, but may give some extra relief) and/or whether to pair it with enteric coated peppermint to help with the pain. I also understand the pain relieving effects don't hit their maximum levels until 10 weeks.

Glad you have found something that is working for you. It can be very uplifting to get some relief after dealing with symptoms for such a long time.

[Readmeastory in reply to xjrs]

Can I ask you what make of magnesium oxide , as I get hard to pass and overflow .

[xjrs in reply to Readmeastory]

Hi Readmeastory,

I use the following:

myvitamins.com/vitamins/mag...

It seems to have less additives than other brands such as Boots. It comes in 100mg tablets, which allows you to titrate the dose up or down depending on how you are responding to it. Maybe start at 800mg at bedtime on an empty stomach or less and go up by 100mg each night until you get a response. This does mean taking a lot of tablets but each tablet is tiny. Unfortunately right now they don't have an offer on, but frequently they do (e.g. 50% off). They used to do them in 270 tablet bottles. Now they've reduced it to 90 tablets per bottle which means I've had to buy a lot of them. I used to need 1500mg but since I have introduced fibre I have reduced to 1000mg. I have tried other brands of 500mg tablets but they don't seem to work for me for some reason. One thing to watch though as I've found out recently is that if you are backed up, you may need a larger dose to shift what is there. Once the backlog is cleared, you may need less (i.e. you might go from normal BMs to diarrhea) - this happened to me a couple of times. When I backed off the dose the diarrhea stopped.

[xjrs in reply to Readmeastory]

Also I take them with a mug full of water and make sure I stay hydrated throughout the day since they draw water into the bowel and can cause electrolyte imbalances particularly if you are dehydrated.

[Readmeastory in reply to xjrs]

Thank you for your help

[Readmeastory in reply to xjrs]

I looked them up and it just says magnesium no oxide . I used the web site you sent . That's what came up are they the ones .

[xjrs in reply to Readmeastory]

If click on the ingredients it says:

Magnesium Oxide, Microcrystalline Cellulose, Magnesium Stearate.

You wouldn't get a Magnesium supplement that was just Magnesium on its own (it would come as e.g. Magnesium Oxide, Magnesium Hydroxide, Magnesium Citrate).

The nutritional information states:

Magnesium 300 mg per serving (which is 3 tablets)

but this is Magnesium as Oxide.

[Readmeastory in reply to xjrs]

Thanks I was just looking for magnesium oxide . Will definitely try it . Thank you .

[Wonderwall3 in reply to Readmeastory]

Apparently, magnesium malate helps with constipation.

[mace6 in reply to xjrs]

I have on the odd occasion doubled the dose and that's always worked. I should have stated I also use Movical twice daily as a stool softener which is very effective.

[xjrs]

By the way, do you have the studies that say that Linaclotide needs to be refrigerated? Everything I've read so far says to store at room temperature in a dry place away from heat.

[mace6 in reply to xjrs]

I read an article stating that there was a possibility that this med could eventually " go off" at room temperature. Storing them in the fridge has worked okay for me but there's no actual scientific evidence to support this.

[xjrs in reply to mace6]

Come to think of it I may have come across that article somewhere, but I think it was before they put that barrel thingy in the bottle which keeps the contents dry. Not 100% sure though.