Had to go to my gp today to try and get meds to control my itching it's driving me insane right now 😣😣!!! Then with the last week I keep waking up during the night with chronic cramps in my calf and feet !! Happened to mention this to the doctor today and apparently it's common when you have cirrhosis / or a liver disease ! I haven't come across this before just wondering if anyone has had this complaint ?? Gone up to 1000mg of ursofalk now. Rifamplin 300mg for itch and entocort steroids twice a day and now quinnie sulphate for my cramps .... has anyone used this before ? I'm stage 4 with cirrhosis /enlarged spleen & 2 varices just found last month. Dx with pbc almost 11 yrs now ! Still working full time and bringing up 2 daughters myself. Lucky enough to have a good family support and not forgetting my PBC family of course. Thanks for reading my post ! Xx
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lynda75
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Leg cramps? I used to limp round the bedroom in agony, laughing at the weirdness of liver causing leg pain... just another one of those "things" chin up !! I had this for 2 years pre transplant, almost forgotten that one! TX 8 months ago...
Hello lynda75.
I've not experienced your leg cramps and hope I don't. I know exactly how you are with the itch though as I am a sufferer with that. The bugbear for me of having PBC as without it I'd not know I had PBC. Mine is prevalent at night and keeps me awake a lot as I expect your does too.
The only thing I can mention for cramps is the same as Oidra I have noticed, quinine is apparently supposed to alleviate them.
I think you might be in the UK due to your posting and if so, you can get a good quality Indian Tonic Water with natural quinine added. (Some versions don't have the real thing.) It is Tesco Finest and nothing nasty in it. Comes in a pack of 4 cans. I buy from time to time myself as don't drink alcohol (never much did but after my first abnormal LFTs early 2010 I ceased), think this can be a good substitute from time to time.
Not sure if you can get quinine prescribed on a script as it is one of the expensive to the NHS listings.
I have suffered from leg cramps for quite a few years, before i was diagnosed and it darn well hurts, they say to keep your feet flat, how the heck you do that when asleep I will never know, if you sleep on your stomach you can let your feet hang out over the end of the bed to keep them flat, this is all I was told.
I have had quinine on a script in the past but can't remember what it was for but I don't think it was for cramps, but i do have tonic water from time to time as I love the taste.
I sometimes get calf and foot cramps around 4 am and wake in agony. I find if I get out of bed and press my feet to the floor, the pain immediately lifts. I then rub my lower leg to get the blood moving and I find I can go back to bed and to sleep. I also drink tonic water for the quinine. I find it is a nice refreshing drink with ice and lemon (no gin of course)!! Good luck
Lynda - I also am Stage IV, have calf cramps in the middle of the night and have to jump up and down and walk them off. Extremely painful! Then during the day pretty much gone. I am on Urso 1000 mg. have an enlarged spleen and am pretty much right where you are.
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High ast 
