I went to see the nurse practitioner yesterday to ask for some painkillers because the pain I am having in my muscles and bones is now long past the paracetamol levels! She wouldn't prescribe anything because of my liver, I had tried to see the GP but there was no appointments for days. She has prescribed for me before and although I understand her dilema, I am in pain! Can anyone tell me what they use for severe pain, in there anything safe out there? 

7 Replies

  • Cathie, I have tried many different things over the years. Now I use Lyrica twice a day and that really works for me. It's bad for your liver but everything is nowadays. I use Lidoderm patches as needed (12 hours on and 12 hours off), no more than 2 patches daily and you can cut them in half to apply to more places. I used a a muscle relaxant, Baclofen, in the past and that helped some. I can't remember right now what else I tried. Oh yes, a topical liquid called Pennsaid, you had to apply 40 drops to the area, I would count 20 drops for each shoulder. That really worked but very expensive even with insurance and bottle would expire before I used it all so there was a lot of waste. Hope this helps and you get some relief. My nurse practitioner used to give me a Medrol dose pack (steroids) for a week and that helped during a flare. See if she is willing to give you that at least. Take care, Ivette, Chicago 

  • Thank you, here in Britain I don't know if these are available but I don't want to take anything which will speed up my PBC. Will ask my GP though , thanks again for replying and keep well. 🎈

  • I was given tramadol for pain by my liver specialist, but i only take them when i can stand it no longer as the are addictive.

  • Thank you.

  • Something like Amitriptyline may help as it is used as muscle relaxant: many people with Fibromyalgia use it.  It was originally marketed and prescribed as an antidepressant,  but is now mainly used for sleeplessness (I had it for this when my menopausal hot flushes were so bad) and Fibro, but in much, much, much smaller doses than were given for depression.  You need to take it at night, as it causes sleepiness.

    However, have they checked your vitamin and mineral levels?  Folk with PBC can have their absorption of fat-soluble vitamins (eg Vitamin D) severely affected, so calcium is not used properly - even osteoporosis can result.  You need checking for vit and min levels, as well as for muscle/joint conditions: RA, arthritis, osteo etc.  It's not good enough to just offer painkillers, they should be trying to isolate the underlying cause: even if it is down to PBC, they still need to check for the vits and mins and do something to counter it.  

  • You're right. My surgery seems to be shying away from doing anything. Now that I'm seen at Jimmy's I feel that they don't want to do anything. I would change doctors bit I'm moving soon anyway, the sooner the better 

  • I was prescribed codeine after foot surgery. I thought that PBC patients couldn,t take Paracetamol, am I wrong.

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