Second hepatology appointment

Hi just thought I would update you on my progress,

I have now been prescribed the urso, x3 per day.

I am now waiting on the liver biopsy date, my specialist wants me to wait to take the urso until after the biopsy as the urso may change the biopsy findings.

I have also been given a cream for the itch called Dermacool, I'm trying it but although it is cooling I can't say it's stopped the itch, has anyone else tried it?

Carol

17 Replies

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  • Hi ... I had a liver biopsy and it confirmed PBC and I start tomorrow on Urso 3x /day. I never tried that cream but I take reactine  for the itching 

  • Hi Becca75 

    How were you with the biopsy, is it really painful and what happened, if you don't mind me asking as I am a little worried.

  • I was diagnosed just a month ago.  The biopsy was not that bad for me.  The prep time longer than the couple minutes to do it.  I was awake with just a couple shots to numb the area. Had to lay on your side for a few hours to endure no bleeding.  Sending blessings for a pleasant experience & keep us posted.  

  • Hi. I'm jumping in on this question. I'm in the U.S. I had a biopsy in December and I was very stressed about it. My friend had one a few years ago and it sounded 

  • Sorry. My computer is acting up. My friend's biopsy sounded very much like Delisle's.  Mine was not. The actual biopsy was almost a non-event. I was in the outpatient department of my local hospital. I I was not allowed to eat ahead of time and the doctor was running very late. That was the hardest part! I had an IV for fluids beforehand and when they brought  me into the actual room of the procedure, they gave me something else that left me quite loopy, but still awake. Then the doctor gave me a local anesthetic which I was aware of but did not give any pain. They used ultrasound to see where they were going. And then he made two punctures very quickly in the area just below my breastbone.  I felt pressure but mostly I just heard the noise of whatever the tool was that did it. The doctor took off his mask and left and I remember saying out loud - was that it??  They rolled me back to the room I had been in while waiting. I didn't have to do anything special. I did not have to remain perfectly still (which I was concerned about)   I was watching television and drinking juice. They kept an eye on me, checking for any sign of internal bleeding every 15 minutes at first and then longer periods of time. After two hours, I went home.  I think I wasn't supposed to lift heavy things for a couple of days but I felt perfectly fine.  By far the hardest part was the anticipation. 

  • Hi - sorry I didn't see the message! I was so freaked out about the biopsy that I worked myself into frantic tears. The part about being awake bothered me. The dr. was nice enough to give me two freezing needles.

    It was find - I didn't feel a thing. Well, the only thing I felt other than the freezing needles was a pressure feeling (that was so quick I only had time to register what happened after it was over) when he inserted the straw into me - but couldn't' feel the actual biopsy part at all!

    It was fine - and if I had to do it again, I wouldn't worry so much - that's for sure. You'll be great! (ps. the extra freezing was I think just to help me mentally calm down, more than for pain - he knew if he gave me more I'd probably relax a bit) :)

  • they also put in an IV needle (which was the most painful I hate those)! but they never hooked it up to anything. At one point I said "I went through all that work for the IV needle and you can't even give me anything good?" lol

    After I got Tylenol 3's for the pain and discomfort - which wasn't bad- I just had a hard time breathing at first, but the T3's relaxed me I had to stay in the hospital for at least 4 hours for observation and had to lay on my right side to put pressure on the biopsy site.

  • Hi Twinkle26

    I have tried all sorts of things for the itch not including Dermacool.  Had a quick look at their web site and it suggests that the menthol can sooth all sorts of sensitive skin conditions.  I am guessing they have given this to you as a topical agent until you have had your biopsy.  Basically nothing topical will stop the itch.  I have used ice blocks in a dampened towel to bring down the heat from itching which is fine so long as it is in a reachable place.  Perhaps once you have had the biopsy they can recommend medication to help you.  For myself I take 2 cetirizine twice a day but others may be on Questran or Questran light.

    When I have a shower I use exfoliating gloves at least once a week then have a really good cream most days to keep the skin supple. 

    I do hope you do not have to wait long for the biopsy.  I had mine done over 10 years ago and although not pleasant it sets you on the right road for treatment.  I see you have mentioned to Becca75 that you are a little worried about the biopsy.  Dr. Neuburger in either a video presentation or in the Bear Facts suggested that if you are nervous then you can ask for something to relax you.  Maybe a quick word with the PBC Foundation can help you.

    best wishes

  • Hello butterflyEi.

    I don't think it would matter re taking anything like the first line for seeing if the itch can be stopped regardless of having a biopsy.  I'm no doctor but I think what would happen is a patient is often asked to stop taking certain medications temporarily pre-investigation.  Questran seems to be the first line.

    I've never really mentioned to my doctors that the itch was really intolerable during 2010 pre-diagnosis of urso and to be honest I wasn't really asked!  I think if I had of pressed the issue I might have been prescribed something as I was originally pre-blood check of the LFTs given a prescription for Piriton (that obviously was of no use - I only took for 2 days, felt so nauseous was enough for me but didn't alleviate the itch).

  • Thank you butterflyEi

    I was on citirazine x2 a day but have read it can cause dryness in a certain place and as I'm 51 I don't want to worry about that too lol.

  • I use reactine for the itching and that helps :)

    I agree, I hope you don't have to wait long for your biopsy - I know for me the thinking about things (the unknown) is the hard part.

  • Hello Twinkle26.

    Interesting reading that you state that you are waiting for a biopsy date as the doctor wants you to have started the urso.  I am in the UK and was diagnosed - December 2010 - with PBC due to symptons I was aware of (itching and at the time fatigue), abnormal as in higher than normal LFTs (liver function test) and it was found I had the specific antibodies (AMAs).

    I have never been requested to have a biopsyas its' not the norm in the Uk if you can be diagnosed without.

    I cannot see the reason for biopsy if you are diagnosed with PBC.  It can diagnose PBC due to cell changes in the liver but it seems that it isn't a true picture of the whole liver as in what some say are the stages of PBC.  The liver being a large organ where the biopsy is taken isn't then the whole picture throughout for staging.  I am confident a simple ultrasound can show a pretty good picture of the liver.  (I did see a programme on tv a couple months prior to myself being diagnosed where 2 men had ultrasounds and the finiding were explained there and then as the programme was live to air.)

    I've tried allsorts of things from altering diet in the early days to shuffling the urso (I did think my itch was worse in the early days of starting urso) to taking baths with Epsom Salts, etc but the itch might seem to be a bit more tolerable or mild but it doesn't shift it.  I don't think much that we use on the outside can actually stopped it as it comes from inside.  Thought to be used bile salts and with these travelling in the bloodstream the itch then is felt any place on the body.  My theory is that we itch due to these salts reacting with all the tiny nerve endings.

    The only time I've not been aware of the itch in the later evening (when I do itch as during the day I tend to often feel prickly) is when I had a sore toe and the pain of it caused that throbbing sensation for a day or two.  The throbbing sort of caused a distraction from the itch as daft as that sounds!

    Creams with menthol in them act a bit like a temporary distraction but it is short-lived unfortunately.  I sometimes feel the odd top shoulder ache if I've been lifting with that particular arm (saying this not had it for some time now) and my husband has rubbed some white Tiger Balm in at night.  The menthol in that caused all my shoulder and top of back to feel really cold and this in turn did cancel out the itch for awhile.

  • Thanks peridot, I used tiger balm cold one in Thailand for the mosquito bites, I was like a walking meal for them.

  • Peridot I've had the positive amas and fatigue, the itch has become worse with trying to rip the back of my hands off when it starts. I've had trouble with getting the liver specialist to give a definite diagnosis of whatever they think not just Pbc. The first one said pre Pbc which I've never heard of! The GP wouldn't commit to anything saying leave it to the specialist and I took part in a diabetic study and they were concerned with my blood levels so they sent a copy to my liver specialist, I then received an earlier appointment than I had been given. The new liver specialist I saw had loads more information and seemed a lot better than the first ( London you don't see the same dr twice, just a member of the team).

    He did say he will write to my GPs but if I can hold off the Meds until after the biopsy as it would be helpful although he doesn't want me to suffer without lol

    I asked if the biopsy was necessary and he explained it would be very helpful but agreed that it can be luck sometimes with biopsys but it will be guided by ultrasound too.

    Carol

  • Hi Twinkle

    Have you had a date for your biopsy yet. I'm going to see if I can get some Dermacool.

    Didn't think that Urso could change the biopsy results. Thought it was just the bloods. Learn something new everyday x

    Where are you booking in for biopsy

  • Hi I'm having the biopsy on 16th of June, then I can start the urso, I just hope they don't effect my stomach as it don't take much these days lol.

    Dermacool helped a little but I did keep applying.

  • Good luck ......I had my biopsy 2013. No pain just shoulder ache after, I had more trouble laying still for a few hours after just laying in same position lol

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