PBC Foundation

8,308 members7,028 posts




My University of MI doctor is referring me to see drs at transplant department next month to discuss liver transplant. He stated that my liver is good no chirosis and no scarring. My issue is psoriasis that I have from liver duct bile damage due to PBC. NOTHING tried worked for me including plasmapheresis that was very expensive even with insurance I paid $1500 for just 3 sessions. I itch the most in the evening and my entire body itches and is scared even my ears and eyes itch. I use eyedrops. I guess it won't hurt to see what they say but I'm very scared just the thought of being put on a list to wait for someone to pass to get a liver gets me very anxious. I am 55 years old worried. I lost two sisters one at the age of 56 from aneurysm was in coma 6 months 2014 then 58 year old sister passed from small cell lung cancer 2018 so my mind gets to thinking the worst because first liver biopsy I had internal bleeding which is rare and was hospitalized for over a week😒

The only itch relief I get is when I take a cup of children's liquid benydryl nightly which gets me tired enough to fall asleep 😴 Thanks for listening..


27 Replies

Hi I'm so sorry to hear about your itching.

I have tried so much for my itch and feel for you.the lack of sleep due to the itch it unbearable.

I'm on Riferden at the moment but my consultant said if this doesn't work this is my next step transplant .

I understand the scareyness

genj65 in reply to janine541

Thank you. It helps to know I am not alone but I don't wish this on anyone

Will keep you in prayer..

Have any of you been offered low dose antidepressant for the itch. I was very sceptical when my Consultant suggested it pre-transplant, however, it was effective. Apparently drug addicts have the same itch during withdrawal and it is very effective for them too.

genj65 in reply to crich

Yes tried and no relief O also take effexor for menopause and it's a antidepressant. I'm beginning to think that URSO is causing my itching 😒

dkester12 in reply to genj65

Urso does cause itching and dry eyes and hair loss. Ive been on 1500 mmg daily for 9 years now and the side effects are getting worse. Especially hair loss. I take a full course of probiotics (i use plexus, but there are many others) and it helps everything but the dry eyes. Im so sorry you are going through this. I agee i would'nt wish this on anyone. 🙏

genj65 in reply to crich

Also have you had a transplant or waitimg for one? I'd be interesting in hearing your experience?

janine541 in reply to crich

No I havent but tryed most things

Hi genj65,

I am 55 , I was diagnosed with PBC when I was 45 , but they believe I'd probably had it most of my life , which would explain the amount of fatigue I had . For the 1st 4/5 yrs after diagnosis I responded ok to Urso , but the last 5 yrs I I didn't & things started to go down hill with my health , my Liver was still in good shape but my bile ducts started to deteriorate, I started to get other autoimmune problems too , Sjogrens syndrome & interactive thyroid , also Vit D & calcium deficiency which excelled my arthritis to osteoarthritis. The bile started to enter my blood stream & the itch began ! it's is not classed as psoriasis here in the UK, it's extreme pirituis as the itch is caused by bile in the blood not a problem with the skin . Like you I itched everywhere , eyes , nose , ears , inside my mouth , without going into every detail every inch of my body , but my feet & hands where the worst ! my body also felt likeit was on fire , I was lucky if a slept an hr a night in the last 2 yrs ! I was covered in huge black bruises on my arms & legs , scabs & lumps everywhere , my scalp was so painful my whole body was , I became mentally & physically exhausted to a point I just wanted to go to sleep & not wake up the suffering & pain was too much to cope with I also had conjunctive hiatus all the time , thrush in my mouth & ulcers , my quality if life ended , I had UVB treatment , 3 months of plasma exchange 3× a wk , every cream & med they could give me , absoulty nothing worked if anything does its just a small fix ! once yr bile ducts start to deteriorate it can't be reversed in turn the liver starts to perform less & less of its jobs causing more & more problems ! I was put on the transplant list in Aug 2018 , but they new they had to help me someway to cope whilst waiting , I was fitted with a nasel billiary drain to draw the bile out of my blood this too is a short term fix & although I had it in (change a couple of times as it gets blocked) for over a yr it only worked at its best for about 4/5 mths but they where the best mths I'd had in over 2 yrs no itch at all it was amazing , I persevered with it ( not many can tolerate it ) for another 10 mths because any relief was better than none ! I had my transplant in Nov 2019 so im nearly 1 yr post now , it has been one hell of a journey , everyone's journey is different ! but I will tell you yr itch disappears straight after transplant , my skin & nails have healed & although I have had many blips along the way , I feel the best I've felt in yrs & even covid can't bring me down ! and although my 1st Liverversary is a massive milestone my thoughts will be with my donor & his family , this selfless man gave me life & will forever be my hero but I never lose sight that for his family who are still grieving the loss of their loved one , but a part of him will always live on in me ❤

I don't know where you live in the world , procedureswith transplants are different in each country but if I can help or answer any questions just ask

I do totally understand all yr fears & worries, I too felt them I'm sure we all do .

I wish you well , god bless stay safe Xx

genj65 in reply to vicary

vicary thank you so ver much for your response and with so much information. Your PBC with itching journey sounds just like mine! I am so happy that you are no longer itching I can't imagine how good that would feel.. I live in Caledonia Michigan and I see a hepatolgist from the University of Michigan. Again thaks for sharing your journey. God bless you from here on and I will be in touch..

vicary in reply to vicary

You are very welcome , yes please keep in touch , if I can help you in anyway I will , or if you just want to rant that's fine too , I know those dark days only to well , but always remember yr never alone !

I wish you well too , take care ❤

Sorry to read of your trials with the dreaded itch. As a sufferer of the itch I can so empathise with your difficulties. It is hard to lose close family and I am sure it is hard to face the thought of transplant. Your transplant centre will probably have some very experienced and kind professionals who will guide you through the process of transplant. From what I have read from others once a transplant is received the itch has miraculously gone.

For myself I take Rifampicin, Sertraline at 25mg and currently Gabapentin in place of colestyramine which I am unable to obtain just now. I drink lots of water and keep my skin well moisturised, for the most part my "itch" is controlled to a level that is tolerable.

best wishes

genj65 in reply to butterflyEi

Thank you for your reply and God bless you!

I recently read that LDN (low dose naltrexone) has helped PBC sufferers with itch. Maybe you can talk to your doctor about a prescription.

If you google LDN and PBC, you will see some articles about it that may help persuade your doctor since it seems like a lot of doctors are not familiar with it.

Camp_Host in reply to KristinCC

My doctor just prescribed me this medicine. I have been on it for a few weeks now. Doc said make sure you give it a few weeks as it may not work right away. He was right, at first it seemed it didn’t do anything, but after two weeks it has started to help some. I also take Mirtazapine at night. This too has taken a few weeks to work but for the last few nights I finally am getting sleep. 😃 Believe me, I still have the occasional scratch down but stop myself in time and lotion up! It has not completely cured the itch for me but it has helped a lot. My skin is healing, a lot less bloody scabs, and a lot better sleep which has been very trying on me for the last year. Good luck, hope you can find relief. 🌸

KristinCC in reply to Camp_Host

Thanks, Camp_Host! I'm so glad it's working for you 🙂 I just started taking it this week. I did a lot of reading about LDN before asking for a prescription and it does seem like a common theme was that it's sort of individual - what dose works best for you, and length of time it took before it started working - some people felt better sooner; some took up to six months and of course some didn't get any benefit. Right now I'm battling really bad headaches and insomnia from it. Did you have any side effects when you started?

Camp_Host in reply to KristinCC

I take it right away in the morning. Doc had me start slow. 1/2 pill for about a week, then increase to 1. I don’t think I have any side effects from it. No headaches as you mentioned, but I try to drink lots of water. Appetite is a bit less, but that could be from the Mirtazapine I take at night. I am a bit tired during the day but I work from home so no driving needed during these covid times. One side effects is “weird thoughts”—kinda get those as well. Nothing drastic, just kinda weird “deep thoughts” if that makes any sense. 🙂 Maybe try pushing more water..for the headaches?

Yes they prescribed naltrexone it didn't stop my itching either😌Thank you so much for your reply~

I am an 81 year old male with Stage 3 PBC, and I also itch. You have my sympathies. Good luck. I and others are with you in spirit! Don

genj65 in reply to Stub007

Syun007 good luck to you as well. It's nice to lnow I'm not alone.

genj65 in reply to genj65

Thank you!

Yes, at Stage 3 and approaching age 82, I should say liver transplant is not on the table.

Meanwhile, indeed you are not alone.

Having a liver transplant seems like such a drastic thing to do if your liver is still ok. In the past I've had itching but only every now and then. Lately I'm getting the itching almost every day. I wake up scratching my self and I'm not getting enough time in between itching sessions for the scratches that I create to heal. But after some time in the hospital with post-covid symptoms, I am on a bunch of new medications. One of them is a low dose blood thinner and I noticed when I read the whole brochure that itching is a potential side effect. I told ... one of my doctors. I can't even remember right now ... and he said to tell the cardiologist because there were other blood thinners that did not cause itching. I haven't done that yet but it's something you might want to look into - is itching a side effect of something that you're taking and is there an alternative?

genj65 in reply to littysgirl

Thank you!I plan to mention this when I go to the University of Michigan the week after next to meet with the transplant department. I appreciate your reply and I so think the ursodiol I take for my PBC is the cause of my itching 😩


Worky888 in reply to littysgirl

I would say it is a very drastic thing to do to have a transplant for the itch. It seems quite a surprise notion to anyone. But if you’ve suffered from the continuous deep pbc itch which absolutely devastates your life, and been through the whole gambit of treatments without any relief, I know from my personal experience that the transplant saved my life. I could not continue indefinitely.

I had 2-3 hours sleep a night if lucky. I was using all sorts of implements to scratch and I looked like I’d been in a war.

My mental health was deteriorating as quick as my physical Health.

The transplant has been the redeemer off my life.

It’s the hardest thing I’ve come through and is not an easy option. I was terrified, but for me there was no choice. It was life saving for me.

When doctors advise it, you know they’ve come to the end of the road. It’s not offered lightly.

genj65 in reply to Worky888

Hello Worky888 and thanks for your information and advice. I am at my appointment with University of Michigan right now will be meeting with doctors and deciding on getting om a donors list. I am taking all comments with seriousness and truly appreciate them. LIVE LOVE LAUGH

My doc has suspended Urso after 3 years of use because of my itching. I walk into his office crying cuz of the itch. Have you tried colestyramine. It is the only thing that works for me. And my doc is also very open and considers a transplant as an option for my itichin and to better my life.

genj65 in reply to Chumito

Yes trued colestyramine 2 months did nothing. So what are you taking to replace URSO and why transplant do you have other concers besides itching? I ask because my main issue from PBC is itching due to liver duct biles being destroyed.

You may also like...