Is 145mcg or 72mcg Linaclotide available in the UK?

[xjrs]

Has anyone been able to get 145mcg or 72mcg Linaclotide in the UK? I have been on 290mcg of the Constella brand under the NHS for the bad visceral pain that I get starting 2am-5am when my large intestine wakes up. Linaclotide is helping great for the pain – the first relief I’ve had since it got really bad 2 years ago. However it is keeping me tied to the house. It isn’t softening my stools, but frequently tries to move my hard stools with force and without warning. Often I am just getting overflow (liquid & mucus which leaks over the edges of the hard stool), which seems like diarrhoea but it isn’t. I’ve started to increase the fibre in my diet (which I haven’t been able to do previously because of the pain it causes) and in the mean time, until I can get my diet right, I have also started to resume Magnesium oxide to soften things up. I’ve noticed on forums that many people have tweaked their dose to 145mcg or 75 mcg to get it to work for them, but it seems Constella is only available as 290mcg, which is going to involve a lot of rejections of the drug since 290mcg may be too strong for some people. I would like to try 145mcg to see if I still get the pain relief without needing to rush to the toilet all the time. I am loathe to give it up due to the pain relief I am getting and I haven’t been able to tolerate amitriptyline or gabapentin. I am having to renew my 290mcg prescription this week. Any ideas?

[Virgo67f]

Sorry I’m not sure if the 145 or 72 dosage is available in the UK.

I’m currently on 290 twice a day though & this helps me go perhaps twice a week. Not ideal but much better than before.

Hope someone is able to help with your query.

[xjrs in reply to Virgo67f]

Thanks for replying and for your support. Glad that Linaclotide is helping you to some extent. It just goes to show how individual IBS symptoms can be and how we all react differently to the same medication.

[Readmeastory]

I’m on 290 as well and like you it helps the pain ,,but I take in the morning and I have small tarry bowel movement and I also feel like it come round hard stools . Then I have a lot brown murky water . I also take a laxido at night and sometimes . One sachet before dinner . I’m eating more fibre and taking prunes but it’s still the same . Last night I took a glass of prune juice instead of my laxido it was just the same in the morning . I dont know if you can get the lower dose here . I’ve only been on it 5weeks as I have diverticulitis and slow tract bowel . Doctors have told me no cure and just meds diet and laxatives . I’ve lost so much weight and just fed up . So just have to keep trying different thinks . Every time I go to the doctor he says eat more fibre . Been to dietian and she says eat more fibre but to be honest I’m in pain don’t go to toilet without the tablet . So just don’t no what else to do . So sorry if I sound a moan .

[xjrs in reply to Readmeastory]

Really sorry to hear you're having a bad time. You're not moaning. I find magnesium oxide taken before bedtime softens the stools. You have to work up to the dose that suits you. I've had to do this just now, since Linaclotide was just producing hard stools. I've had soft formed stools for the first time the past 2 days. I am also finding fibre difficult - I've probably been ramping it up too quickly to try to get a result without the magnesium. My night time intestinal pain is back but I'm not sure if it is the magnesium being taken at a similar time of day (although 2 hours away) that is making the Linaclotide less effective or the Linaclotide can't handle the amount of fibre I am throwing at it and can't control the resulting pain. As you say its a case of trying different things. The Monash University app is useful for finding what you can eat and in what quantities (monashfodmap.com/ibs-centra... plus this UK one (kcl.ac.uk/research/work-wit.... Take care of yourself and good luck with your experimenting

[Readmeastory in reply to xjrs]

Thank you for help . I think I over did the prunes and prune juice as today I’ve been in a lot of pain and bloating.. I will have a look at theses web. Sites . As I don’t no if I’m eating to much fibre or to little . And don’t see my dietian for another few weeks . To be honest it’s a hit and a miss sometimes . I findif I take the tablet in the morning works for awhile . But if I take it in the evening I get more pain during the day so I’ve been sticking to mornings . Doctors say it’s different for everyone . So trial and error .😊

[xjrs in reply to Readmeastory]

Sometimes you can't do right for doing wrong! I've been experiencing the same i.e. you end up being overly helpful with yourself and it tips the balance. Food quantities are very important and those apps should help with that - fingers crossed. Good luck!

[Readmeastory]

Hi it’s me again I’m going to ask if you ever used a glycerine suppository to help clear your back passage . I just feel everything is come round a blockage . I just don’t no as all I’ve used them before at the start but not for awhile .

[xjrs in reply to Readmeastory]

Sorry, I haven't myself - no harm in giving it a go.

[Readmeastory]

Thanks will try it , if I don’t manage to pass anything soon .