I am 31 and have recently been diagnosed with PBC. I went to the doctor after months of persistent itching - mainly on my hands and feet but often elsewhere too - and blood tests revealed the disease. My GP and hepatologist do not believe my itching is related though, as my bilirubin blood tests came back normal. My question is - has anyone else experienced itching with normal bilirubin levels? Apparently this isn't possible but it seems odd to me that this wouldn't be a symptom...seeing as you know, itching is one of the main symptoms of PBC!
Thanks!
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SarahFred
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Hello Sarah,I had itching when first diagnosed when my bilirubin was normal the itching was Palm of my hands and soles of feet with occasional days of itching all over and always worse at night.I also had fatigue and aching joints.Jane.
My doctor hasn't prescribed anything for the itch,as although it is annoying I can mostly manage with it ok, it does sometimes keep me awake.I think that there is a treatment though so if it bothers you a lot I would ask your doctor about something for it.I find being too warm makes my itch worse so try to keep reasonably cool.
Hello SarahFred.
Yes I started with intense itching early 2010. Diagnosed with PBC December 2010. Normal bilirubin but the itch continues every day. Over time with taking urso and improved LFTs (liver function test) and GGT it has altered in frequency and severity, I tend to get it late at night and it vanishes by 6a.m.
I t hink even if a cure was found tomorrow though PBC would be stopped in its tracks the itch will more than likely persist due to having a compromised biliary system. I think once we start to itch with PBC doubtful in mind if it can be eradicated unless some medication is found to work. I've not taken any medication for the itch as the firstline of defence to try is Questran (or in the UK generically known as colestryamine) that tends to be hit and miss and from what I've read since I was diagnosed, more miss than hit.
I have periods of itching,not as bad as many.I have chronic fatigue and bone pain also the symptoms that comes with fibromyalgia. Itching is a symptom of PBC and as with the fatigue it does not correlate with what stage you are,I am stage one.Take care.
Yes, it is possible to have pruritis (Itch) from PBC and still have normal bilirubin levels.
As above, the first line therapy is cholesyramine (brandname Questran). It isn't perfect but it works for many people. It is important to take the questran before AND after breakfast and away from all other medications.
Thanks everyone for your comments and help. I think the hard part will be convincing my specialist that any form of medication for the itch is necessary, given my normal bilirubin levels. Luckily ice packs offer a lot of relief!
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UK bilirubin result
Positive AMA went down to normal
Itching
