After reading recent posts on pain relief, it seems we are all being given different advice on suitable medications that are liver friendly. I was recently prescribed codeine, only to find on the pamphlet it says not to be taken if you have chronic liver disease.I stopped them immediately. I know everybody has various reasons for their liver disease, and each case is different, but If there was a list of the medications that are safe for us to use for pain relief, we would not be living with constant pain. I know people will say it's down to the hepatologists to decide what to prescribe, but, where do they get their information from......it seems, not from the same source. My Hepatologist for example, doesn't acknowledge my capsule pain is liver related. What are your experiences with pain relief?
David
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davianne
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I think the difficulty is almost all drugs are metabolised by the liver (some more affect on kidneys, but not so many analgesics). So, many drug information leaflets will Inc caution regarding liver disease.
Taking this into account Dr's tend to be pragmatic, and prescribe on a risk vs benefit ratio. I was given tramadol for RUQ pain (which I've had on and off for 19 years, fairly consistent for last 15 years). I was told by a Hepatologist that tramadol was less harsh on the liver than paracetamol + codeine which I had been using.
Recently tramadol has been considered more dangerous than first thought (not necessarily liver wise, just generally for long term use) . Dr's tried to move me on to pregablin/gabapentin - which are drugs which dampen down nerve impulses, so reduce pain sensations. However these drugs did have an immediate impact on my liver inflammatory markers, so I've been left on tramadol. However during my TP assessment the Dr said that paracetamol is a very effective analgesic, and said I could use 6 per day (3g in 24hrs). I think paracetamol is dangerous in overdose, but considered OK in small amounts. (NB this was a recommendation made to me by a Dr, and not for others without consultation with their own medical care providers).
If medications have been prescribed by a Dr knowing you have liver disease its very likely they are aware the cautions which are advised by drugs company, and are prescribing anyway. Remember medications are under extreme scrutiny, and have to note all cautions however small. You could check with a pharmacist, or go back to prescribing Dr to be sure. You could have a trial for a couple of weeks and get bloods done to see how the liver has responded.
I hope you get some relief, I know how horrid it is to be in constant pain. For me night time is worse, stops you sleeping and the knock on effect is so impactful to everyday life.
I pretty much knew that drug companies have to cover themselves, and doctors are very wary of prescribing opiate based meds. It was a new , young GP who prescribed the codeine, but I did ask at the time if it was liver friendly. I know paracetamol is OK in moderation, but they have little effect on my capsule pain.
My problem is exacerbated by the fact that my Hepatologist has said that at my age (72) a TP is unlikely, so I must take extra care of my liver, as it is compensated just now, and I can't afford to do anything that will jeopardize that. I feel that I'm between a rock and a hard place with this.
I'm so sorry you're suffering. I've yet to find a solution. I've seen a pain management consultant, she was the one who wanted to try the pregablin. Even she felt they had nothing to offer, that they have things which improve chronic back pain etc. But visceral pain seems to be a mystery.
I do think that mood can affect how much you perceive the pain. When I'm low, I am more aware of it, however when I'm engaged/happy. Being with positive people, keeping busy really does help. It doesn't change the pain but your natural dopermine is activated when you are happy, and helps with coping with the pain.
My Dr's do think my pain has liver origin, but only after years of tests to make sure it is nothing they could have treated. They told me that at TP they cut the nerves, so I shouldn't have continued pain?? Not sure I'm convinced about that, as areas around the liver could be involved??
I'm so sorry I can't help, only think some mindfulness, or meditation/yoga may help you cope better, it's certainly worth a try.
I'm coming to the same conclusion as you, it's just another symptom of liver disease, but one that there is no effective treatment. I have a trapped sciatic nerve also (an old rugby injury when in my twenties), but an electric heat pad, and my TENS machine keeps that under control.
You are right, mood and keeping busy can help as a distraction technique.
I am, by nature, a happy person, so when meeting up with friends, or walking my wee dog Teddy, I almost forget it's there, but night times are different. My hobbies are a boon also.
That's great that your pain may be gone after TP, I hope and pray that it comes very soon.🙏🙏🙏
Love your picture of Teddy. My toy poodle monty gets me out of the house, although this last week has been hard. Luckily my husband, son and father in law have helped. Monty has enjoyed snuggling with me in the mornings, and he makes me happy (most of the time)!! It does make a difference. I really hope you find some relief. Thank you for your kind thoughts x x.
I agree,individual situations. My gp prescribed dihydracodiene after codeine stopped working,not for my liver pain though,osteoarthritis. She has been very involved with my specialist since being diagnosed with PBC/AIH overlap . I do get my lfts checked on a monthly basis and when they flare all my meds are stopped and i am then only on the steroids,azathioprine and urso. I am well looked after.
Geez Angela, that's got to be a little rough stopping all pain meds. I was on Lyrica for fibromyalgia and it worked great for my arthritis and depression too, but when I became convinced it wasn't good for my liver, l went off it.
I suffered horrible brain zaps, which was very surprising, and scared the shit out of me! Scared enough that l decided to wait until pain was much worse to try again. l think, while we all have different pain tolerances, it is not really normal to expect a pain free life. Pain exists for a reason. My fear is being so drugged up l don't feel something else going wrong, or becoming drug dependent. For me, waking up due to cramps in legs and feet is very unpleasant, but feels almost normal now lol.
Our eldest son overdosed on Paracetamol- continuous over use - had a mental breakdown - and has damaged his liver to the extent of no alcohol allowed 🙁. He was 34 at the time 😕.
But of course that was an extreme situation. I have 6000mg of para a day atm. - since TP 15 months ago.
You are right, people think I'm the life and soul, but sometimes the facade drops, and my true feelings show through. Fortunately that doesn't happen that often, and my depression is a lot better than it once was.
I am sometimes guilty of overdoing the "happy" act.
Aww thanks Lynne. It’s certainly been a long road. Way better than when it first happened thank goodness but still a way off from going back to work. He is very very nervous all round 🙁.
I was personally prescribed paracetamol for pain, to keep within the prescribed daily dosage, and use until the pain was gone. With pain that doesn't go I can see how that's a problem. Has your doctor referred you to s specialist pain management clinic? He could do that if you wished him to. I am so sorry that you are never out of pain. It's such a thief of life.
I only take paracetamol and amitriptyline at the moment, which in combination work a little bit. I have to be sure that whatever I take is liver friendly, and I'm not sure if a pain management clinic would have the knowledge of the limitations that liver disease presents, although I may be wrong.
It may be why it's a referral by GP service. Patients are treated on the basis of their condition as well as which type of management suits them e.g chemical, cbt etc. There are even some residential programmes I read about this morning.
David, Guys and St Thomas' Hospital have a residential pain clinic. The course last 4 weeks. Patients stay on-site in hospital single-sex accom, their own room, shared bathroom.Food is provided.. A variety of specialists input sessions throughout each day, Monday to Friday, (go home week-ends). It is an NHS hospital, and treatment is of course free of charge. I don't know who'd qualify more than you and Lynne for this treatment do you?
What do they have at QE for a pain clinic? If you go to St Thoms' website you can see what the daily schedule is and how to be referred. Also, there's a sleep clinic. It should be called the Can't Sleep Clinic perhaps. Pain and loss of sleep are illnesses in their own right that devastate lives of people and their families and there are experts and researchers working all the time to address them.
Unfortunately I haven’t a clue filly. It’s just Hepo referred to it in a clinic then got dicerted and we never came back to the subject - suilly me - on my own - no wife to help 😕👎.
I see a Sleep clinic every time I walk to liver clinic. Again no idea. Blinkers on me 😀
Blimey! You suffer pain all the time and sleeplessness.
You pass a pain and sleep clinic on your way to liver clinic.
You didn't raise the topic of pain and when the Hep did so you were distracted.
Yet you are a person of intelligence, wit and humour.
You keep a lot of people smiling here.
If this doesn't add up to a referral to a neurologist, pain clinic, sleep clinic, whatever it takes to try to unblock what causes a lot of problems for you,
We have to unlearn the idea that the doctor will know what to do without us saying what's wrong. It's our consultation. Sometimes two people sit opposite each other and both assume the other will say what needs to be said. We have to say what troubles us. If we have any idea what investigation could find a cause and remedy, we can say so and if we have no idea we can ask our doctor to suggest. Doctors expect us to have made this change and it helps them.
Would no pain no gain work? I was going to suggest liasing with our forum's new Agony Aunt. Thought Lynn with an e.xxxx had shared in the pain clinic, but I see she has beat you post pain? 🤕💊
Just a little input from me! I had batches of steroid injections many years ago in both elbows, the instant pain relief for me was amazing, the only down fall back in the late 80's into the 90,'s was they couldnt keep repeating the treatments. Lucky for me after giving up all gardening, squash and martial arts my elbows improved over a few years so joint replacement wasn't necessary.
I'm 🙏 that the medical profession have now tweaked this medication to allow it to be used more repeatedly especially for YOU if it does work!
Love Trish x
in reply to
Thank you for your kind words. How are you feeling today? Love and hugs Lynne xxxx
I just got a corticosteroid injection in my shoulder for rotator cuff pain, they still need to limit them. Also they affect the immune system response, l was warned they could slow the recovery from open wounds ( l recently had a skin biopsy).
Oh Boot you poor thing, I do hope your injection has kicked in and relieving your pain! Thank you in the meantime for updating me that the medical profession are still restricting the amounts of cortisone injections. Please keep me updated on your skin biopsy results plus my 🙏are with you on this one!
You must know the steroid injections work immediately. They biopsied this on my upper arm, leaving a huge scar (3x the size of the suspicious lesion) so now l am using a silicone bandage to attempt to shrink it! $$$
That's awful Boot on the $$$ front when you now have such a large scar! It's a shame they didnt warn you but I guess it wouldn't have made any difference if they had!
I have a suspicious lesion on my arm. Showed GP. He said "let's wait til it gets bigger". I didn't answer, I couldn't come up with anything polite. I haven't heard of silicone bandages. I had a lot of honey wound-healing treatment in hospital.
No I don’t think it’s meant that way. An Agony Aunt is someone who gives advice to anyone with problems they want help with. Most often, but not exclusively, by writing answers in the papers! It actually could be considered complimentary if someone called you an Agony Aunt 🙂. Not if you were a man though - but probably OK if you’re gender neutral.....
People with a dry sense of humor can come across pessimistic, suspicious, or paranoid, but it all comes from a place of curiosity and trying to determine where the limits of comedy are. The world isn't always a cheerful place, so having a dry sense of humor is a great tool to have.
in reply to
Yes, I agree, I've always been able to laugh at myself etc. Even on our wedding day, top hats thrown in the air, one hit me in the head!! Thought it was my father- in- law's, when we got video, slowed it down and it was Dave's, my hubby 😅
It is definitely good to have a laugh, I certainly did when I read everything today 😂 no point in me moping around cos it won't change anything!!! Thanks for making me smile 😊
When a person with a dry sense humour tells a joke it is not always obviously funny. He usually tells it using a serious tone or without any emotion.
Deadpan
Deadpan, dry humor or dry wit is the deliberate display of a lack of or no emotion, commonly as a form of comedic delivery to contrast with the ridiculousness of the subject matter. The delivery is meant to be blunt, ironic, laconic, or apparently unintentional. 😜
An Agony Aunt advises people in agony of indecision on which way to jump in a dilemma of NIGHTMARE proportions. e.g.
Dear Agony Aunt
My mother-in-law is coming to stay for a long week-end. Should I go on saying "he's in the bathroom and will be out soon" as I've been telling her for the past three years? Or should I simply tell her the truth that I packed and posted him back to her several years ago? The big problem is she may stop sending us expensive gifts on our anniversary and I've come to depend on the cash I get for these on E-Bay? Help! I'm at my utter wits end!
You have the answer yourself my dear. Parcel the old crone up and post her to Papua New Guinea. Put your house and hers on Air B and B and travel the world in style. This will compensate for your cash shortage and keep you from being home if "An Inspector Calls" if you get my drift?
Agony Aunt.
Boot, don't you have Agony Aunts in USA?
in reply to
Lol. I went to a couple of pain clinics that were neither use nor ornament!! The ones offering injections have at least listened to me!!! Xx
Thank you David for raising this important issue. Sometimes hepatologists work with chronic pain teams in hopsitals to manage ongoing pain problems. Perhaps this needs to happen more.
You maybe right, but I don't think my hepatologist, ( the only one in South Bucks Trust), is one of them unfortunately. He doesn't think capsule pain is liver related sadly.......so no help there.
I was prescribed codeine for toothache. My dentist suggested it and I rang the GP who said I needed to obtain confirmation that it would be ok for me from the Hepatologist at Leeds. They scanned approval over to the GP Surgery, who then gave me a prescription.
Hi Oscar, that's strange, it says on the leaflet with my codeine.....do not take if you have chronic liver disease. I don't think there is any joined up thinking going on with hepatologists.......and there should be, they should all have the same guidelines.
I've been prescribed co codamol as it's a long time since I had it and I think my body is getting used to a couple of meds, the codeine does seem to be taking the edge off the pain, thank goodness. See if I get some sleep tonight !! I certainly hope so!!I wish you all a good night's sleep. Xxxx
in reply to
Yip - It's usually taken when everyday painkillers, such as aspirin, ibuprofen and paracetamol alone, haven't worked. 👍
David - It’s funny - not ha ha - but do you know I honestly cannot remember what I was taking before the TP.... shocking isn’t it 😕👎. I mean now I have Gabapentin, Codeine and paracetamol for pain. That is all - so lucky me I say 🙂👍.
Hi david, my husband began suffering with intense pain in his shoulders arm and back and the liver specialists have said unrelated,
he has been given a diagnosis of fibromyalgia , which can arrive suddenly, maybe with stress, (and I wd say his body and mind has been tolerating a lot of stress as he has been ill for 2 years and on the transplant list for one year with fortnightly drains etc.) Anyway great news, He was prescribed prednisolone and it worked immediately . A godsend.
He has now tapered the steroid down to 5 mg a day. He is pain free
I was given Endone (OxyContin) after my hernia operation. It works well but it’s very addictive. I’m still trying to get off the stuff and I was only on 5 mg tablets. My doctor wants me on targin which is also OxyContin but it’s got something else in it so it’s not addictive.
I don't know if it's of any interest to you, but for those of us with AIH, there is a definitive list of which painkillers you can take and how much, depending on the extent of damage to the liver, which was provided to our group by one of the leading Consultants. Let me know if you would like further info. All the best.
Yes please it would at least give me somewhere to start, and show to my GP and consultant. I found out yesterday that my go to pain relief, amitriptyline, is no good for cirrhosis sufferers.
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Pain and loss of sleep are illnesses in their own right that devastate lives of people and their families and there are experts and researchers working all the time to address them.
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