I have had PBC for years with progressive itch. I am an "incomplete" responder to Urso and Ocaliva (on both). I take Cholestyramine but in the past year the itching has gotten significantly worse where I scratch all night, am scaring up my arms and legs and tear the dead dry skin off the soles of my feet. What other options besides Cholestyramine. I have tried steroid creams, benedryl, hot baths to confuse the nerve signals and ice packs on inflamed areas. I am 61 yrs old, stage 2 and not likely to require a liver transplant before it is age inappropriate.
Help please?!
Kathy
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Q8Cooper
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I am really sorry you are having so much trouble. I do get a little itch and what seems to help a lot is cold showers. Since the ice pack doesn't help you much the cold shower may not be a big improvement either. In my case the hot water definitely can set off an itch. I have had fewer itching episodes since I started taking cold showers. Do you see a hepatolagist? My Dr. Said they had a few things to try but so far the cold seems to help me. Anyway, maybe ask your doctor if he has anything else up his sleeve.
It's good to hear from you though. I hope you can get better.
Hi I suffer too email Pbcfoundation.org.uk and with this as in the uk we have lots of steps of medication if each doesn't work for you here we are o the medication for a certain length of time to see how much the itch is reduced also go back to your consultant as you didn't say how long been on the first line medication for pbc itch hope you get some new medication to try x
Request a prescription for Vistaril. Look up Pruritis and PBC. I was blessed by having a dermatologist who was already helping a few other PBC patients. It’s not a skin issue but a nerve issue.
Hi Kathy, I know how horrid this is for you as I am an itcher of long standing. My personal experience may be of help to you.
I started on Cholestyramine (questran light) some time later and for a short while it became unavailable which was quite a relief as it is a pretty disgusting medicine to take even hidden in mashed banana with kefir. The alternative was cholestagel (a tablet) neither the questran nor the cholestagel smothered the itch so Naltrexone was added. Naltrexone seemed to bring out a very aggressive tendancy which I found distressing so Rifampicin replaced the naltrexone. I was now taking cholestagel and rifampicin but experienced break through itching so at the next consultation with the specialist he added 25mg sertraline which can be increased to 50mg. Due to COVID I was caught in a country with wonderful pharmacists who spoke very good English but they were unable to supply all the medication I was taking - cholestagel nor cholestyramine were available and the itch was yet again blighting my life.
With the help of Professor Jones's book PBC: The Definitive Guide for Patients with Primary Biliary Cholangitis: (which can be found on Amazon), some questions asked of the PBC Foundation and my own decisions as specialist care was not available to me I have ended up with the following cocktail which seems to suit me well.
300mg Rifampicin (early ours when I wake for a bathroom break) Rifampicin needs to be taken on an empty stomach. Around 9 a.m I take 300mg Gabapentin some time around 5 p.m. on an empty stomach and at least half an hour before dinner I have another 300mg Rifampicin. URSO comes next with dinner and before bed I take 25mg sertraline and another 300mg Gabapentin (Neurontin)
As a non responder to URSO and Ocaliva - has the doctor talked about bezafibrate. There seems to be quite a bit of chatter that Bezafibrate together with URSO is beneficial and may help the itch. You could find out more from your hepatologist or contact the PBC Foundation direct.
Whilst you are waiting to see your hepatologist may I suggest to you - increase your water intake to ensure you are well hydrated. Avoid any sugars and artificial food stuffs - although there is no research quite a few people have experienced a lessening of their itch with a change of diet. Keep your skin well creamed after cool showers. There is an anti histamine which can be purchased over the counter here in the UK - not sure for America - Cetirizine, this was the very first tablet recommended by my GP, I took one in the morning and one at night, this was just to try and help me until I saw the hepatologist. Sometimes they work but only for some.
good luck, I hope some of the above is helpful to you
Hi I have exactly the same itching problems I was taking the cholestramine but ended up making it worse and now stopped taking I don’t itch all time but have really bad days where bleed and bruise from itching and not can’t find any creams etc to relieve it I feel your pain regards sherrie
I tried everything the doctor had recommended and finally landed on 25 to 50 mg of sertraline. My itch was out of control, with bleeding and keeping me up all night. Hope this helps. Sending prayers, Anni
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