Advice on safe pain relief

[Cat1218]

I was listed for transplant in November 2023. Last week I had a terrible fall. I have one fracture and very painful soft tissue injuries. I was only given some IV paracetemol. I have spoken to my transplant team who are now working out what I can have as they said that there will be something. I have,of course been suspended from the list as not mobility very poor. Has anyone else been in a similar position and had any kind of pain relief. Grateful for any help or advice.

[X19Dave]

You should not take paracetamol it is very bad for your liver my wife had to take tramadol but you will need a prescription

Dave

[PipM82 in reply to X19Dave]

With respect it’s not appropriate to be saying that about paracetamol as we’re not medical professionals. I, for example, have cirrhosis and have been told I can take up to 2000mg a day.

[X19Dave in reply to PipM82]

I can understand where you are coming from but you have not asked the correct question you should have asked where I got that information from instead of having a dig at me

We were given that information that paracetamol is a big no form my wife's medical professional and if you read the paperwork you get with paracetamol it states do not use if bad liver problems or something like that

[Pie-eater in reply to X19Dave]

Lots of things say don’t take if you suffer from liver problems, doesn’t stop doctors from prescribing them for me. I was give paracetamol (IV and oral) both before and after transplant. I have a list of things I should definitely avoid, Ibuprofen is on it but paracetamol isn’t.

[AnxiousPete in reply to X19Dave]

I do not believe this is correct -are you confusing Paracetomol with Ibuprofen and Asparin which are NSAIDs and which are not appropriate and damage the liver?

[X19Dave in reply to AnxiousPete]

Yes it is correct told by the hospital and doctor when my wife was waiting on her transplant

[AyrshireK in reply to X19Dave]

It's weird how the different hospitals treat this issue. My hubby was assessed for t/p in January and was actually prescribed paracetemol for a headache whilst on the unit - leaving hospital with a 100 tablet box on prescription. During his entire 'life with liver disease' he's been told that paracetemol is the safest of all pain killers (even with liver damage) providing you keep to guideline limits or below. He's been told he can take it for post banding pain following endoscopy, when his spleen died and for bumps after falling off his bike plus for toothache, fever control with covid etc etc.

After his splenic artery aneurysm embolisation he was also prescribed oral morphine and tramadol along with paracetemol - all by the liver unit.

Katie

[Cat1218 in reply to AyrshireK]

Thank you for this info. May be they could give me something like your Husband had. Feel more positive now, been at rock bottom for a week, thanks again.

[X19Dave in reply to AyrshireK]

Yes I think you are right different hospitals different ideas which makes it very hard for us to know what to do

And the bigger problem is we will never know who is right and who is wrong

But we have to do what we are told by our consultants, hospital or doctor

Dave

[AnxiousPete in reply to X19Dave]

I would challenge that advice as does not appear to be supported by any research I can find. Paracetomol is the first line pain relief choice for people with cirrhosis as advised to many subscribers to this forum.

[X19Dave in reply to AnxiousPete]

Do not know what you are reading mate but you need to check better go online look at paracetamol and it says avoid with liver problems and that is all sites and as someone before said if paracetamol was released now it would not be approved, due to its toxicity to the body which is very well known

Dave

[AyrshireK in reply to X19Dave]

Unfortunately Dave I kind of have to disagree with you on this one. I have just done a Google Search for 'Safety of Paracetemol with cirrhosis' and every academic article it brought up stated that it is safe with liver disease - but, sometimes requires a reduced dose.

Pain relief was something I checked with hubbies liver doctors due to him ending up in A&E in Aviemore after falling off his bike and needed some analgesia, we were told he could absolutely take paracetemol (at the regular dose) as he was over 50kg and had a compensated liver.

Some exerpts from online academic articles.

"Reduced dose paracetamol is generally safe for patients with advanced cirrhosis. Typical dose is paracetamol oral 500mg four times daily."

"Paracetamol is safe in patients with chronic liver disease but a reduced dose of 2-3 g/d is recommended for long-term use. Non-steroidal anti-inflammatory drugs (NSAIDs) are best avoided because of risk of renal impairment, hepatorenal syndrome, and gastrointestinal hemorrhage. Most opioids can have deleterious effects in patients with cirrhosis. They have an increased risk of toxicity and hepatic encephalopathy. They should be administrated with lower and less frequent dosing in these patients and be avoided in patients with a history of encephalopathy or addiction to any substance."

"Simple analgesia - Reduced dose paracetamol is generally safe for patients with advanced cirrhosis. Typical dose is paracetamol oral 500mg four times daily. - Non-topical non-steroidal anti-inflammatory drugs (NSAIDs) should be avoided in these patients. NSAIDs increase the risk of bleeding and hepatorenal syndrome." This last one from an NHS Greater Glasgow & Clyde document.

The NHS page on Paracetemol nhs.uk/medicines/paracetamo... -

Who may not be able to take paracetamol

Paracetamol is not suitable for some people. To make sure it's safe for you, tell your doctor or pharmacist if you:

- have ever had an allergic reaction to paracetamol or any other medicine

- have liver or kidney problems (It doesn't say these groups CAN'T take it just to check first)

- regularly drink more than the maximum amount of alcohol recommended (14 units a week)

If you weigh less than 50kg (8 stone), check with your doctor or pharmacist. You may need to take a lower dose.

This as we said before goes back to individual doctors thoughts on the matter but generally as rule paracetemol is the safest pain relief.

Katie

[AnxiousPete in reply to AyrshireK]

Precisely what I was saying to him.

[X19Dave in reply to AyrshireK]

Not what I read and if you look on different places you get different replys all I am saying is that is what we were told at the hospital

And I found this on line

short and long term use have both been associated with elevation of liver transaminases, a surrogate marker for acute liver injury

So it depends on where you read and how deep you look and also if you are open to other people's points of view and understand they are only saying what they have been told

Dave

[AnxiousPete in reply to X19Dave]

All drugs have negative effects on the body but paracetomol is proven by all the academic and medical research to be least harmful. All pain relief comes at a cost and I will go with my hepatologists advice for my cirrhosis as I hope everyone else will take their own medical professional advice however it is perfectly appropriate to challenge an opinion if it disagrees with peer-reviewed published academic research. Leaflets from drug companies are there to protect them from potential law suits.

[X19Dave in reply to AnxiousPete]

Yes mate you are correct do what you are told we were told stay right away from paracetamol but that was when she had her problems ideas now might have changed

And yes totally agree that they put stuff on there leaflets to protect them from potential law suits

[tonicwater]

I am prescribed co-codamol and take it on a daily basis for other health issues. I have been assured time and again that it is safe, but not to take more than 3000mg per day. Interestingly, I saw a reel a few days ago, where they were discussing paracetamol, they were talking about the fact that should paracetamol apply to be a medical drug today it would not be approved, due to its toxicity to the body. They also have absolutely no idea how paracetamol works, apparently. Sadly, we are all in the same boat with this pain versus cirrhosis issue, no one seems to be able to provide a good and safe painkiller or agree on one. My doctor winces every time I arrive at the surgery and say my co-codamol is just not enough.

[AnxiousPete]

I was told by my hepatologist I can take Codeine for arthritis pain and normal dose paracetomol. I have compensated cirrhosis.

[Cat1218 in reply to AnxiousPete]

Thank you to everyone for your replies. It really is a tricky one, I am hoping to hear from someone today and I will let you all know what, if anything, I am prescribed. Thanks again.

[ThreeSmiles]

Hi Cat

Why have you been suspended from The List due to your mobility? I could barely walk when I had my Transplant.

Miles

[Cat1218 in reply to ThreeSmiles]

I think that it is because you need to be mobile after surgery. At the moment I can not walk at all due to the pain everywhere. It really is a nightmare, I have a fractured left knee, a damaged right knee and very very painful soft tissue injury to right shoulder. My right shoulder and arm and left lower leg are black with bruising. Still waiting for call re. Pain meds. Will post as soon as I hear.

[ThreeSmiles in reply to Cat1218]

Very sorry to hear that Cat 😕. Hope you get better soon so you can get back on the list.

[Cat1218 in reply to ThreeSmiles]

Thank you so much for your post.

[2022minks]

Hi Cat1218, sorry to hear about your fall, hope you have a steady recovery and can get the right medication to help you through. Although you are suspended from the list for the moment try to get some physio help with mobility they may be able to work in a repair time plan for recovery and keep up with protein in your diet as if you were still on the list.

try and get as much local help as you can and don't be put off, gp should be able to help and you need to get some extra care and recovery to get you back on the list.

I send you hugs and love ❤

[Cat1218 in reply to 2022minks]

Thank you for your good advice, once Leeds gives the go ahead for the correct pain relief, I know that it will help me to get moving again. I will update as soon as any news. Thanks again for your post, I appreciate it.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Cat1218

We are sorry to hear about your fall. As other members of the forum have said, you have done the right thing in speaking to your medical team about pain relief, as it is a question that your own health care professional is best placed to answer, as only they have access to your medical records.

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Cat1218 in reply to BritishLiverTrust8]

To everyone who responded please see my post titled 'Update On Safe Pain Relief'.

[Rshc]

my partner has rheumatoid arthritis as well as LD and he has been told that the only pain relief safe for him to use is paracetamol and for short periods codeine but to watch for constipation.