Intense non-stop itching

I was diagnosed over 2 years ago with PBC. Up til recently I have been symptom free except for eyes and mouth. the last 3 days and nights I have had severe itching even at night. I have to take cold showers to get any relief. Then its short lived. I have Sarna lotion which isn't much help. I have to wait for a script for Cholestrymine. I am feeling all alone without support. Will this last long (itching)? Does it mean my disease is progressing?

16 Replies

  • I am so sorry about your suffering. I am so far symptom free, like you were. But, I am concerned, because in many posts people said that itching began a good while after diagnosis of PBC. Anything changed in the meds you take? If you take Urso, do you use the same brand? I'd go and do a blood test to see if bilirubin has gone up since last time. This could explain the itching. I hope somebody with the symptoms responds with more information.

    I hope your itching stops soon!

  • Hello iagra.

    My bilirubin has always been normal and I started itching intensely early 2010, diagnosed with PBC December 2010.

    The itching is said to be of no correlation as to how we are with PBC as it can occur any time. Some start itching and that is how PBC is discovered as in my case, some never itch and some unfortunately do develop it.

  • So, you are saying that you were itching in early days of PBC and this is how you were diagnosed? But, then, itching stopped, when you started on Urso? Now it restarted again, while you are on Urso?

  • Hello iagra.

    Yes, early 2010 I just started itching which seemed like constantly. I thought it would just go away but a fortnight later, compelled me to take myself off to the GP (I'd not been in some years). At first the thought maybe allergy related but meanwhile asked me to go back for blood checks. I was 45 at the time.

    My LFTs (liver function test) came back higher than normal and from then on I was on the NHS Pathway for various blood checks (had one to rule out bone or liver, came back liver) and then was asked to go for a scan (that came back showing everything quite normal, even the consultant when I saw him a few months later stated he could see clear bile ducts on it). I had antibodies check at my first hospital appointment beginning November 2010 (which by that time I was 46 and half) and December I was diagnosed with PBC and started taking urso.

    No the itch has never stopped since taking urso. What has happened is that over time due to my LFTs improving (they are still not normal but with PBC though they can go back to normal range, not expected), the itch has settled and I get it late at night but by 6a.m. it has vanished. I get a bit prickly during the day (when I bend at the knees or elbow for eg) but it is a case of the itching surfaces at night these days.

  • I developed high liver enzymes during a routine yearly physical. Then They took a biopsy, that's how I found out I had PBC. I had a little itching but nothing like I am experiencing now. Ive been on URSO FORTE 500 mgs. twice daily since being diagnosed. Then like I said its nothing like what I am going through now. I can't get through the night without having to get up several times. I'm wearing loose clothing, taking cool showers, using Benadryl and have my bedroom cold. Cant seem to get comfortable when doing very little. If my body tempature rises the more I itch.

  • URSO FORTER is considered "brand" for Urso. So, you are already taking the best formula. I read that intense itching doesn't mean at all that BPC is worse. It could be just the opposite. I hope that what you have is very temporary. Something possibly have triggered it and hopefully it'll stop suddenly as it came. I'd see your gastro doctor at this point and discuss what else you can do to make itching less. It'd also good to see your current bloodwork. Maybe it'll point to something. Good luck and God bless!

  • I like you am fairly symptom free , I was diagnosed 6 years ago, I just get dry eyes and mouth and a pain on my right side when I eat. In the last year I have had occasional itching and have taken Piriton for it . I have noted it's when I have eaten certain foods ( mostly when I've over indulged in chocolate ) so now I try and limit anything that causes me to itch and so far I've been itch free for the last 3 months. Could it be something you've eaten ?

  • Hi Buddy, out of interest, what foods d you associate with the itch?

  • My itching got severe when I started the Ocaliva in December; I take it with my Urso, which I have been on since 2005. The cold does make it feel better for a moment a d I too use the Sarna, but for sensitive skin. It keeps me up throughout the night and I have sores and bruising from head to toe due to the itching. I've been on Naltrexone for the past 3 years to help with the itching, but now I think I have to try something else since it is so bad.

    I'm sorry you feel alone and not supported by anymore. Remember, all of us are here for you and keep praying that this will get better and so will your support system.

  • Hello kristieerhodes.

    I did read about the clinical trials for this new Ocaliva (I am in the UK, not marketed here as yet) and that was one thing that did get me note, the fact that in the trials some did start to itch and I think if I am right a couple pulled out due to this.

    I also think that urso can cause itching but if one starts to itch pre-diagnosis then I think it might be difficult to say whether it is the urso. My itch was very intense during 2010 and the doctors never offered me anything at all. The itch did seem to be worse for a few months after I started taking urso but then over time it has got into a pattern where it occurs late at night and continues until around 6a.m. Some nights it is more intense than others.

    I do think though fatigue can be a big part of PBC (mine vanished at some point the year after diagnosis but that's not to say I don't get tired due to broken sleep at night), the itch has to be in my opinion far worse. Nothing like feeling tired at night and then going to bed to lay down and then start itching badly.

  • I'm in Scotland and have only been diagnosed stage 4 cirrhosis in Nov. Putting me on a transplant list in a few weeks I am fairly symptom free apart from the itch which seems very localised to my back which is covered in new moles scaly patches and it's like aper to scratch. They say keeping your skin moisturised can be the answer as even the tinyest bit of loose dry skin acts like a feather and annoys the nerve endings. However. How do you moisturise your back alone. I can't reach. Have tried all sorts. Find fixing a cotton ad soaked in moisturiser attached to my trusty back scratcher( oh God what would I do without that) can help. Just hope I've not got melanoma too. That would be the icing on the cake.If anyone knows why itching is localised would be grateful to hear. Struggle on folks xx

  • Sorry sometimes my phone doesn't print p. So if a word seems strange put a p in front x

  • Hello krazy-girl.

    Sorry to read that you too have developed the itch of PBC. I started itching early 2010, by December 2010 I was diagnosed with PBC.

    My itch has persisted even after starting on the urso. The itch was very intense in the early days and over time it settled somewhat and I tend to itch late at night (around 9p.m. start feeling prickly, by 11p.m., do know I am itching any place on the body) which then causes broken sleep during the night a lot but by the time 6a.m. arrives it seems to have vanished.

    Unfortunately I think once we have developed this itch and it persists it is with us, that is how I see it. Reckoned due to used bile in the bloodstream that cannot be processed the same as pre-PBC. It figures it can be any place on the body if in bloodstream. Actually though we itch it is a sort of protection as the used bile leeches to the skin surface to escape as it is toxic.

    I feel that after we have been not eating from one evening until breakfast time, by that time digestion has taken place and the used bile has been dealt with, hence we don't itch until after we have started to eat again.

    Hope Questran (or colestryamine) works for you as it seems very hit and miss, hence I've never ventured down that road. Well that is to say I've not reached that desperate stage as yet where I'll try anything.

    I've tried various things myself over the last 6yrs but have to say nothing seems to work. You can only get a bit of temporary relief. I do find though that being cool is by far a good help.

    The itch is said to be in now way any indicator of how the PBC really is as it can occur any time. Unfortunately we are one of many who do get this itch of PBC as some don't.

  • Some answers by Dr. Hugo E. Vargas, M.D. :

  • Mine comes & goes can disappear for weeks & then be horrendous daily. X

  • Hi krazy-girl

    In the late 1990s I presented to the GP with itching. It was not until 2006 I had a diagnosis of PBC. In 2014 after a stressful period of time I started itching, the PBC itch and burning sensation was intense. GPs gave me various anti histamines which did not work. Eventually I asked to be referred back to a specialist (having been dismissed to the care of the GP in 2010 and was without a specialist for nearly 7 years) At the time of asking for the referral I asked for cholestyramine, which takes a while to get into the system, this did not control the itching but reduced the severity. I was prescribed naltrexone but this did not suit me at all. I now have Rifampicin with the cholestyramine (taken different times of day) which has again brought the level of itch down but not rid me of it. I use a 2% menthol cream which gives temporary relief and can be used when out and about. I rarely wear anything on my arms which is the main source of my itch although it does migrate to my face, back and legs.

    When you start the cholestyramine it will take 6-8 weeks to get into your system. Do not get disheartened it works for a lot of people. When I first started it I noticed a lot of white fleck in my stool, now it is not so much but is still there. If you take other medication such as the Ursodeoxycholic acid make sure to take this at different times as suggested in the patient advice leaflet.

    I also use ice directly onto my skin sometimes just to try to confuse the sensations.

    The sensation of the itch does not mean your PBC is progressing. Others have given you links to good explanations.

    best wishes

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