Prucalopride : Hi all, feeling a bit let down. I... - IBS Network

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Prucalopride

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bigbunbun3

Hi all, feeling a bit let down. I have had IBS-C well over 20yrs, and tried almost every thing to resolve it. I had high hopes of being prescribed Prucalopride, by the Gastroenterolist I saw last week. I have tried so hard for this appointment, as most of you know it is not an easy road to get this far. Well, he did do a colonoscopy for me a few weeks ago, which thankfully came back clear. I think I have a slow transit problem, but ordinary laxatives do not work. The Gastroenterolist was very vague towards me and said he was not allowed to perscibe it, ( Prucalopride ) which I thought was strange as he is a consultant. He wrote a note for my GP, telling me he would perscibe it, but after handing this in to my doctors surgery, they said they could not do it. I feel so let down, I don't see my GP hardly at all, only occasionally to discuss the IBS, so don't misuse the NHS. Any one got any thoughts? Would it be worth trying to go private, and seeing a different consultant?

14 Replies
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Unless you live in Scotland where Prucalopride is not recommended for treatment and you have no underlying conditions which prevent it being prescribed, I can't see a single reason in the NICE info as to why you've been refused it.

Yes, I'd definitely ask to see a different consultant (maybe colorectal rather than gastroenterology) and get a private referral if necessary.

Cat

bigbunbun3 profile image
bigbunbun3 in reply to Hidden

Hi Pagan1 & IBS17, thank you for your replies. I have contacted the Consultants secretary, explaining the situation, she said that she will speak to him and get back to me. We will see......

Hi sorry I have no words of help, know the feeling of not being treated very well. I was hospitalised by GP a couple of weeks ago, thought great will see gastrologist and they will get to the bottom of all my flares IBS and skin, no!! Just had three hours in A and E , they did send me for CT scan because of my age. I have got diverticulitis and a very small gallstone now. I am not going back to GP again and if I have a bad flare I will just take paracetamol and sweat it out. If they actually listened to us and believed in things like leaky gut and helping us heal our gut we may not have to bother them again. I’m totally lost and don’t know what to eat, am fed up of boated feeling if I eat or drink anything, acid reflux, nausea, bad stomachs, pain, sickness, migraines etc etc. I have tried so many different things to help over the years am really struggling now to work.My GP wouldn’t even prescribe me buscopan or colperamin. Some of my friends get them on prescription. Hope you can get what you need. Ask for a referral to a different consultant at a different hospital if you can for a second opinion. Here we have two hospitals we can be referred to and the difference I have heard from friends is amazing as they are part of the same trust.

I’m so sorry to hear that your doctor will not prescribe the prucalopride. I have started having it just over the last few months as I have exhausted all other treatments over the 49 years that I have suffered constipation. It’s definitely working for me - my doctor told me each month supply costs around £70 but as the alternative was a colostomy, I was happy to try it, it’s ‘buying me more time’. I think you ought to try to put in an appeal to get the tablets if you have tried everything else and as you have your consultant’s recommendation for them hopefully that should help your case. I’m. It sure how to do such an appeal though, I hope google can help you with that. I think it’s about time that medics realise permanent constipation is a debilitating condition and as it probably will never get better or go away, it should be treat as s life long illness and suffers should not have to fight for the right medication and support. Good luck

Dear julieleesley68, thank you for your reply. You had suffered for so long, I am so pleased that you are finding some relief. We all spend so much time and money trying to find a solution to our IBS issues. I have been talking to the Consultants secretary these last two days, it seems he will look into perscribing it if I pay for it privately. I think I will do that, to see if it actually helps me. It is going to be a very expensive out going if I find it does help. Please could you tell me the amount of time taking the Prucalopride, did you first notice an improvement ?

I will post again with any news x

Hi,

My doctor prescribed the 2mg tablet and the first one I took had the desired effect within an hour, which means it’s not ideal to take at bedtime like my previous medications. Unfortunately it also gave me a bad headache so I bought a pill cutter and reduced myself to 1mg. Consultant said to take every day but I find the 2 x bisacodyl per night works for 5-7 days then as I notice them not working as well, I take the half a prucalopride tablet which gives me a better clear out. I find the half tablet takes around 1-2 hours to work and I don’t get the headaches- I hope you can get them and they work for you too. It’s an awful condition to live with and very debilitating and ruins your family life- Key ne know how you get on

:-)

Hi thank you so much for your detailed reply. I will keep you up to date. 🐰

Hi Julieleesley68, I thought I'd let you know, I now have the Prucalopride 2mg (3 month supply) I did have to pay for it though. Very expensive!! I also purchased a pill cutter, I will try 1mg to begin with. I am going to take my first dose tomorrow, ( I am at home all day, in case it works a little to well!! ). Thank you for your previous replies, they have been so helpful. I will let you know how I get on with the medicine in a couple of weeks. 🐰

Hi,

I’m so pleased you have it but also very angry that you had to pay for it- that is so wrong. I will keep my fingers crossed that it works for you and I look forward to hearing how you get on- good luck 😀

Aww thank you 🐰

I used to take these and they work well. I had them prescribed by private colorectal surgeon as I have private medical insurance. But if you go private you will have to pay full price for them as they won’t give them to you on NHS. This is about £90 a month. I have slow transit constipation and a few other issues. I finally pushed to see a consultant on the nhs. He has now prescribed Linaclotide or Linzess and my doctor will prescribe it. It works slightly differently to prucalopride but it works. It is also on the Nice guidelines although slightly cheaper. Go and see your doctor again and say if your consultant had prescribed it they should give it to you,

bigbunbun3 profile image
bigbunbun3 in reply to Pat1

Hi Pat1 I have said I would pay privately for the Prucalopride, but I did not realise how much they would cost. Not sure yet what is going to happen, I find out more tomorrow.

Hi I’ve just been given these tablets. Not taken yet would love to know how they worked for you x

Hi ShazR, they didn’t work for me at all, but I think it depends on what is going wrong in your intestines/bowels. I think my IBS-C is down more to food intolerances than lazy bowels. Hope it works for you x

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