Greetings - I was diagnosed in September 2022 with a mild form of PBC. I don’t really have any symptoms and don’t take any medication for it. I was only referred to a hepatologist after years of irregular blood tests showing raised ALP and Gamma-GT. I’ve had a multitude of scans, blood tests etc to reach the diagnosis and currently meet my consultant twice a year to monitor the situation.
My reason for posting is that I have insomnia which is aggravated by itching every night in bed. My GP disregarded any connection with my liver problem and suggested it was caused by dry skin. She prescribed amitriptyline 5mg at night but this hasn’t helped at all (it is currently 5.43am and I haven’t been to sleep yet). So, could this be PBC itching and has it happened to you? Does anything stop it? I’ve taken both Piriton and Loratadine tonight but they haven’t helped.
Sorry for the long post but any advice welcome!!
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Citylady33
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I’m thinking it would be good to speak to the liver specialist about sleep issues and itching. I’ve found in my experience GPs don’t necessarily know much about PBC. Also, the PBC Foundation can be a good source of info. Certainly itching is a feature of PBC for many so it is possibly linked for you. I’ve only had it fairly mildly but others here have more experience with major itching and treatment for it.
I’ve been dealing with perimenopause and one of the symptoms has been a reduction in the capacity for sleep. Depending on your age, that could be something to look into as well. But of course the itching wouldn’t help!
Hi, itching is definitely a symptom of PBC. I suffered really badly with it before it was controlled by medication. Your liver specialist should be able to help and there are different things that they can try. I tried a few treatments and I now take rifampicin every day and it really works for me. I hope that you get a solution soon x
As the others have said itching especially at night is a recognised PBC symptom. If you go to the PBC Foundation's page (free to subscribe if not already a member) you can find a lay copy of the EASL Guidelines for PBC. In there you can find information on the itch and medications available to the hepatologist to help you. The PBC Foundation also has a help line should you need some guidance.
For myself, an itcher of old! I was started by the GP on Cetirizine an antihistamine which did not really work, I eventually got to see a hepatologist who started me on Colestyramine which in part made a difference but life was still miserable, the hepatologist added Naltrexone which did not suit me I became very aggressive, Sertraline (an anti depressant) was added at 25mg and eventually Rifampicin was added which is a game changer for the so called itch of PBC.
Along came Covid, I was caught out of the country, I was unable to source Colestyramine so after a bit of fiddling with my meds and what was available in the country I was staying I ended up with Rifampicin, Gabapentin, Sertraline to control the itch. For me the itch was in the upper body and brought me very low so I was very grateful to the hepatologist.
These are symptoms of PBC. Please talk to a specialist regarding Urso Forte. This drug should be taken to help slow the progression of PBC, and can help with itching.
Hi Citylady, your GP most likely is not an authority on PBC. Many people get very itchy, and it’s from PBC. It’s happened a few times with me- doesn’t last more than a day or so. Also, you can have spurts of fatigue.
Bottom line- talk to your liver Dr about what you are experiencing. Everyone is different .
In regards to the Insomnia, I had it before I had PBC (I also have Fibromyalgia), I am taking 50mg (5x10mg) of Amitriptyline per night, (at one point, it was 80mg) so you may need a higher dosage than you've been prescribed? I honestly can't imagine 5mg would be of much use! But of course, I'm not a Doctor, this is just my personal experience. I would definitely ask your GP about it, though.
Hmmm.. I am not sure what a mild form of PBC is, pbc is a progressive disease, the progression speed is somewhat controlled by medication . Typically URSO. You should really see an expert, which is a hepatologist. If you have PBC you should be on medication
I think she may mean mild scarring. In the beginning of my diagnosis it was said to be mild. That’s what the fibroscan showed. Of course fibroscan nor mre’ are 100% accurate.
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