Lactulose

[Benwillfred]

I was diagnosed with Non Alcohol Cirrhosis many many years ago.Everything stayed very stable until December 2023 when a routine colonoscopy resulted in a perforated bowel. 7 weeks in hospital..3 of which in ICU ...2024 wasn't the best year I developed terrible ascites which resulted in a very successful TIPS procedure in July. Since then I have been gradually building up my fitness and strength and following all the advice and my wonderful liver team give me...then December 2024 an umbilical hernia decided to play up which resulted in another Christmas stay in hospital !!...I'm now out and feeling much much better I'm 69 in a couple of weeks and determined to live life to the full !!

I've been perscibed lactulose along with other medication and my consultant emphasised how important the lactulose is in the prevention of HE.

I asked for a repeat prescription last week only to find that the hospital had left it off my medication list...I didn't take it in hospital as I was nil by mouth.. my GP surgery has now responded saying that lactulose is available over the counter and that I should just buy it as and when necessary I dont think the team that issues the repeat prescriptions understandthe importance of this medication ...am I over reacting in getting in touch with my liver team as I do take it 3 times a day and for someone on a fixed income it is quite expensive.

Please let me know your thoughts ...sorry for such a lengthy post.

[Ambra123]

Lactulose is much cheaper of you buy it online.

[Benwillfred in reply to Ambra123]

I am just confused as to why I can no longer get it on prescription when I know people who get for example paracetamol on prescription !!Thank you I'll check out prices on-line

[Ambra123 in reply to Benwillfred]

Sorry I can't help you with prescription because I live in Italy, things might be different.

[Oscar21]

I would get in touch with your Consultants Secretary either by telephone or email. Explain the problem and ask if they can write to your GP stating you require a prescription of Lactulose. I indeed have it prescribed and now I’m 60, do not have to pay.

[Chihuahuaslove]

I also take lactulose which for I would rather not but my really put his foot down and told me how important it is to take it because I also have liver cirrhosis and apparently it stops going to your brain and damaging it. I don’t think a lot of people in the probably just think you have a problem going to the toilet which isn’t the case at all. I would definitely either call your doctor or the consultant that you deal with about your liver. Hope it all works out for you.

[Epal1959]

No your not over reacting as your story sounds similar to mine I'm 65 and in August 24 I had a liver transplant but prior to the transplant every time I went into hospital they would forget the lactalose ,however , you may find that doctors do recommend you buy it over the counter . Thankfully not I noongar need it but it pays to go with the flow

[Benwillfred in reply to Epal1959]

Good luck following your transplant in..unfortunately I'm not a suitable candidate having had cancer in 2023

[Starlight79]

Unfortunately I have had this issue a few times, either the GP hasn't looked at the Hepatology letter correctly and not added to my repeat prescription or had required further information ie dosage but not followed up. If you contact the consultants secretary and explain what has happened they will definitely help, just remember to keep checking with your GP to get it actioned.

[Porcupine_Tree]

Hi , I am prescribed Lactulose and Rifaximin to keep HE under control. The doseage of Lactulose is critical, otherwise it may not assist with the HE or too much and you won't leave the bathroom. They mention 3-4 loose stools a day is ideal. I take 20ml twice a day and receive. it on prescription.

They probably think the HE occurrence will be minor because of Tipps.

As you well know lactulose is quite expensive OTC.

Wrt to ascites, have you been offered Spironolactone and Furosemide ?

Try and limit your salt intake, use lemon or herbs instead.

Good Luck

[Benwillfred in reply to Porcupine_Tree]

Yes Spironolactone 150 mg and refaximin twice per day ...my respiratory consultant is speaking to liver consultant about possibly increasing Spironolactone . The problem is I don't think it was down to the doctor but probably a 'clinician ' at the practice !!

[x007jcp]

if you’ve been prescribed it ask the prescriber to contact whoever is refusing to repeat it?

[Readlots]

I don’t think you’re overreacting, you’re doing exactly the right thing talking to your liver team.

[Marie2272]

My husbands physician prescribed lactulose when his ammonia levels were critical. My spouse took it for awhile, and as with many things he then refused it. I can tell you he is in a constant state of confusion, and does a lot of “confabulation” in his conversations. This is HE. He became unable to drive without getting lost for hours during simple trips to the grocery store, so he no longer drives. I live in the States, so can’t speak to the cost, but here it ran about $70 for 3 week supply, that was with insurance coverage. It seems to be important to keep ammonia levels in check, and the lactulose does that by “keeping things moving”. Best wishes to you.

[2022minks]

Get a message to your consultant they should be able to write to your gp to have this kept on your prescription. its importance with HE and in helping your liver disease symptoms are key to you being able to stay healthy and it should be on your repeat. Ask to see a gp too they get copied in all of your consultant letters so they should be aware. Keep trying and don't get fobbed off xx