No more Linaclotide! : I have been on... - IBS Network

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No more Linaclotide!

ESpencer profile image
25 Replies

I have been on Linaclotide for 20 months and it has been brilliant, life changing. I now cannot get hold of these tablets, manufacturing problem, I believe. Can anyone recommend a different medicine that they have used which has been successful? I am struggling with prucalopride!

Since not having Linaclotide I am swollen, in a lot of pain, struggling to eat as it makes me feel so unwell and feel nauseous.

Any recommendations heatedly received please.

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ESpencer profile image
ESpencer
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25 Replies

I have the exact same problem! I posted about this here and emailed Allergan Pharmacuticals. If you look up Constella/ Linaclotide posts in search bar you will find my post with email address and their letter of reply. There are no alternatives so I suggest you also write to their customer services to see if the info has changed since I wrote?

Meanwhile I’ll follow your post so please update if you learn anything. Best of luck to both of us. 🤞🏽

Virgo67f profile image
Virgo67f

This made me smile as I was about to write the exact same post.

My consultant has increased my daily dosage to 2x 290 mg however these are like gold dust. I phoned over 28 pharmacies yesterday & only one had one box.

Like you I’d be keen to hear of any alternatives that have been successful. Movicol, fybrogel etc don’t work for me unfortunately.

I’ll email customer services to see what the latest update is.

Fingers crossed things do return to normal soon x

in reply toVirgo67f

Oh good let us know re customer services - they replied fast to me but may by now be besieged! I’m rationing mine to every 3 days which is awful as I’m in loads of pain from taking the usual laxatives as they give me IBS!

Virgo67f profile image
Virgo67f in reply to

I’ll pop any response on here.

Like you normal meds do t work so I’m loathe to increase the dosage & then run out shortly. The joys! X

Virgo67f profile image
Virgo67f in reply toVirgo67f

Response received from suppliers:-

Firstly may I offer my sincere apologies for the lack of availability of Constella.

Unfortunately we have seen delays at our packaging supplier. New legislation: - ' EU Falsified Medicines Directive' has meant that we have to comply with new packaging regulations. Whilst this will benefit counterfeit prescription medicines getting into the supply chain, for Constella it has caused problems. The packaging requirements have not been met.

I have been assured Allergan are doing everything possible to push our manufacturer for stock to released as soon as possible. However, the next date given when we expect stock to be in pharmacies is towards end June but they are pushing for an earlier date. Normal supply will be expected after this date.

May I recommend that you contact your GP to see if an alternative product can be supplied in the interim, as the manufacturer we are unable to offer an alternative product as we are not privy to patient medical history.

in reply toVirgo67f

Same reply as I received a few weeks ago - was hoping that it would be sooner but end of June is better than never of course 🤞🏽🤞🏽🤞🏽

Angie11 profile image
Angie11

Yes the same problem in n. Ireland. My dr just said there is no alternative which I already knew. End of June is a long way off for us !!

ESpencer profile image
ESpencer

This doesn’t sound promising at all! ☹️😭

I’m seeing he specialist tomorrow, will let you know if he offered alternative suggestions.

ESpencer profile image
ESpencer

Good news, hopefully. Allergan informed me that it should be back with them by 21st June and then back in pharmacies shortly after. Fingers crossed.

in reply toESpencer

This is indeed great news - thanks!

Hi there - have you or anyone else here managed to get hold of Constella yet I wonder? I have been away for a few weeks but asked my pharmacist today if he had it back on shelf but he said no sign at all. He told me allergan are probably lying which seemed a bit strong?! I only have 2 capsules left now as have been taking one every 3 or 4 days so very keen to get back on track. Please could you or others let me know when it’s back for you and I’ll let keep you updated too. Thanks

ESpencer profile image
ESpencer in reply to

Hi. I am going to the chemist tomorrow so I’ll let you know how I get on. 🤞🏻

in reply toESpencer

Thanks🤞🏽

ESpencer profile image
ESpencer in reply to

No luck I’m afraid. 🤯

in reply toESpencer

Oh no - I was going to say oh poo but thought better of it. No poo would be more apt! 🤷🏼‍♀️😞

ESpencer profile image
ESpencer in reply to

That did make me laugh! 😂

ESpencer profile image
ESpencer

Some good news. I’ve got some Linaclotide!! 🥳🥳🥳 it arrived at the chemist today. Fingers crossed you’ll get some too.

in reply toESpencer

Sorry I had a dental emergency when this case through but I’m really so glad you are back on track. I will go back to my useless pharmacist tomorrow and ask again! 😊

ESpencer profile image
ESpencer in reply to

Good luck. I hope you manage to get hold of some and fingers crossed this never happens again!

in reply toESpencer

Thanks. I’m going to try again today 🤞🏽

in reply toESpencer

At last - I have got it too! It came with a letter from Allergan about it having to come from a different supplier - did you get this as well? X

Virgo67f profile image
Virgo67f

My pharmacy says they’re still unable to obtain supplies even after I went in with an email from the supplier & mentioned that others had received their prescriptions.

Looks as though I’ll need to return to the doctors for another prescription to take elsewhere.

in reply toVirgo67f

I haven’t got the letter on me right now but I think the gist was that they are obtaining supplies from a Norwegian or Austrian manufacturer for now now due high demand/ need. I only got one pack whereas I usually get 2. It looks and us packaged much the same but I guess the problem with new EU packaging directive is the reason for them having to turn to non EU countries for supplies now? That is what my pharmacist explained but no idea how this will pan out.

ESpencer profile image
ESpencer

I didn’t get a letter, that’s strange. My pharmacist did say he was only allowed to order 1 pack and had to send a scanned copy of the prescription! Sounds like this is going to be an ongoing problem!

Virgo67f profile image
Virgo67f

Thanks for the heads up. I’ll go back to the chemist this week.

One box only lasts me 2 weeks so isn’t ideal!

Glad to hear you’ve been successful though.

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