Hello PBCers

[Camp_Host]

Hello,

I am new to this chat. I was diagnosed with PBC over 10 years ago. I have been taking Ursodiol since diagnosis. I have had an up and down road since finding out. First of all the itching is enough to make yourself go crazy!! My doctor has suggested certain lotions and has just recently given me a prescription for sleeping/depression pills as I find myself waking at night itching the palms of my hands, bottoms of my feet, and backs of my legs. Some nights are so unbearable. 😞

The fatigue is also a struggle. It takes all I can to make it thru the workday. I am so exhausted by the end of the day it’s a struggle to mow the lawn, make supper, or do the dishes and laundry. My husband is very understanding as he sees me struggle with this disease not only thru the itching and fatigue, but from the other issues that have developed in the last 10 years.

Three or four years ago I was diagnosed with watermelon stomach. It’s a condition in which the inside of the stomach is bleeding—another autoimmunity issue. My doctor has fused the veins twice to help stop the bleeding.

Last year I was told I have an ulcer and am taking meds for that now as well.

Stomach and digestive issues have been ongoing for me for many years. I feel full, bloated, and feel as if I have to go to the bathroom all the time. When I lay down to go to sleep I feel pressure as if I need to go to the bathroom. I sometimes spend an hour or so at nights in the bathroom. I have been taking gas-x chewables to calm the stomach down some. Some nights it helps, others I am up and down all night or end up sleeping on the couch sitting up as that is more comfortable than laying down. Those are the rough nights. Makes it hard to get up and get to work and make it thru the day on 2-3 hrs of sleep.

Back to the itching, I have sores and calluses from the constant itching on the bottoms of my feet and the backs of my legs. I lotion in the morning and at night just to relieve the need to itch. This does help but is still a struggle in the winter months. A humidifier helps during that season.

Sorry for the long post but some days this disease is unbearable. I stumbled on this site a few nights ago as I was awake and depressed on this whole ordeal. My doctor knows my struggles and has been helpful to help with what he can but you can’t really understand completely unless you are experiencing these issues. How do you explain to someone that your body itches but there’s nothing to itch? Or how do you explain why your dead tired but haven’t done anything? No one will really know unless they have been there. I am hoping by talking with others I can get some advice or be able to vent and talk thru some of the struggles we are all going thru.

I am very fortunate to still be able to chug along with my existing liver. I have had a biopsy and do have lesions on mine that are monitored each year. I have also been told my spleen is enlarged some due to my passages being compromised from this disease.

That’s me in a nutshell. Thanks for letting me tell my story. 🙂

If I can help anyone in any way, please let me know as well.

Thanks.

[Auds5]

Hi Camp_host

First of all welcome to the forum and secondly sorry to hear your struggling with the itch and fatigue that goes with PBC and your other health problems.

Your story sounds very similar to mine in that the itch started on my palms and soles of my feet but then spread over my entire body. I seen 3 different Dermatologists who couldn't explain the itch but finally seen a Gastroenterologist who diagnosed PBC. He prescribed antihistamines and Colestyramine which didn't work for me but then I was referred onto a Heptologist as my LFT's were so deranged alongside the itch and fatigue. The Heptologist prescribed Rifampicin and this relived the itch for me. He explained that the liver wasn't processing the toxins properly and so getting into bloodstream which then was causing my skin to itch.

So it would be worth mentioning to your GP/Consultant and get them to explore what medication can relieve your itch as it's a vicious circle of itching, skin taking longer to heal from the scratching, not sleeping properly and being fatigued.

For me personally I found once I got the itch under control my quality of life improved, I was able to sleep a bit better, my skin improved and was able to cope more with the fatigue.

I since has been diagnosed with AIH alongside the PBC but I was able to stop taking the Rifampicin for the itch and only take it now when I have flare ups.

Really hope my experience gives you encouragement to get help as I totally understand how much the itch affects everyday life and is so debilitating. Don't let people fob you off with " it's only a itch, scratch it" as was my case. It's your liver not fully working properly.

All the best and let us know how you get on.

Auds5

[Camp_Host in reply to Auds5]

Thank you! I have an appointment next week and will mention the Rifampicin to my doctor. Best wishes to you as well.

[SheepJane]

Sorry to hear what you are going through. I don’t know if this is helpful, as you know, PBC is an autoimmune condition. From your post it is possible that you have other related autoimmune conditions. Are you only seeing a liver specialist? It’s important you also see a rheumatologist. There are lots of treatments ( realise only for symptoms) that could help that a rheumatologist could suggest. Apologies if you already have this option. Sending you best wishes even if this information is not helpful.

[Camp_Host in reply to SheepJane]

Yes I am aware of the autoimmunity issue. For some reason my body feels it needs to continue to attack itself. 🙂 I also see a dermatologist as I have perioral dermatitis ☹️ and am on doxycycline and metronidazole for that condition. I may talk with my doctor on seeing other specialists with all the issues I seem to have. Thank you for your advice. Best wishes to you as well.

[Starfish72]

Hi

You have been through a nightmare and I totally agree, the itch is indescribable and also affected my mental health.

Rifampicin is my saviour! Cholysterimin did not really work for me but rifampicin took away 85% of my itch within 10 days.

Started on OCA last month & bloods slowly going down.

Please try the rifampicin...after quality sleep your mind will be refreshed enough to face this curse of a disease head on.💪

Take care

[Camp_Host in reply to Starfish72]

I am definitely going to check into the rifampicin. Only downside is it’s another pill I have to take. 😞 Orsodiol, doxycycline, omeprazole, occasionally doxepin when I can’t sleep, all the vitamins my doctor has advised (calcium c, vitamin e, vitamin d3) it seems like all I do is pop pills! 😳 I wonder what all the drug interactions are doing. What are the side effects of rifampicin? Do you feel it’s better to take with food or on empty stomach? How many a day? Just want to see where this would work with my current “pill schedule.” Thanks.

[Starfish72 in reply to Camp_Host]

I know, I take a collection of pills too and I have questioned the effects on my liver but to be without itch is bliss.

I take 2 rifampicin a day before food. I split them, one before bfast & the other before dinner.

I have had no side effects other than my urine became reddy orange which is normal.

X

[butterflyEi]

Hi Camp_Host and welcome to this forum. You certainly have a lot to cope with.

I am an "itcher" and was first started on cholestyramine, when that did not work Rifampicin was added and then 25mg sertraline was added and with this cocktail the dreadful so called itch diminished, it is still with me but nothing like it was. If you have joined the PBC Foundation (free through the link above) you can find a very good article on the "itch" in one of the back copies of the Bear Facts magazine written by Professor Neuburger which I think is in the Spring 2015 issue. You may like to print it off and show your doctor. For many of us the "itch" can be controlled by medication. Hopefully once the itch is controlled you will sleep better and be able to live your life a little more comfortably.

I am also wondering if a change in diet may help some of your tummy issues. Some of us with PBC find that wheat and dairy products cause bloating and gas and red meat can be difficult for the liver to process.

I hope some of this is helpful but of course any changes are best advised after discussion with your doctor.

[Camp_Host in reply to butterflyEi]

Thanks for the article. I will check it out.

As for my tummy...I am sure that some of it’s due to the medication I am on. I have pretty much taken milk out of my diet as I feel miserable an hour after having a big cold glass of milk. Miss it but hate the end results ☹️. We also have tried to eat dinner earlier in the day. That gives me time to digest before bed. I choose chicken over other meats, especially pork—pork makes me miserable as well. I also think that some of it has to be led to stress. I feel the “buildup” on Sunday nights before the work week begins so I am thinking it’s job related as well.

Don’t get me wrong, it’s not every night this occurs but it isn’t rarely either. It does take a toll on my sleep, personal life, and mental health.

I have thought about asking my doctor about beano. It seems that too much air and bubbles are running thru my system and am wondering if those bubbles get resolved prior to digesting I could get rid of some of the pressure and misery.

I do have an appointment next week and am going to mention the article and rifampicin and see if beano or some other bloating/gas reduction can be taken to help relieve that issue as well. Thanks for all the great advice! Im glad I joined! 🙂

[Camp_Host in reply to Camp_Host]

Had my yearly yesterday. Labs didn’t come back as good as they have been. Bilirubin is very high...doc decided to run liver test functions in a month, then two and then every 3. Follow up in 6 months. Have been only doing tests yearly and yearly checkup so this is a slam on the breaks.

Mentioned the rifampicin and he said a “no go.” My white cell count and platelets are too low to introduce this med to my equation.

Kinda bummed and worried now....hope levels are better next month. Hoping it’s just a spike that comes back down.

Take care all and Happy Thanksgiving!

[Jeanb47]

Hi

I was very interested to hear that you have "watermelon stomach" My mother also had that diagnosis. Since PBC has a genetic component, I also wonders if she had undiagnosed PBC as well.

Thank you for your post. I also struggle with poor sleep and the fatigue

Take care

J

[Camp_Host in reply to Jeanb47]

Yes my doctor chose to do a egd a few years back and discovered this. He says it was common for pbcers to develop this condition as it too is linked to autoimmunity. He then fused or saudered the veins that were bleeding. He did this for a few years and then discovered the ulcer issue so recommended getting that controlled as well.

Signs of this condition are tarry stools which I did have somewhat but that has subsided, so at least I think that issue is somewhat under control now.

[JaniceK]

Hi

So sorry to hear what you are going through and I can relate to it, you do think you are going off your head. I was diagnosed in 2004 but only this year I have been hit bad with varices in the oesophagus that has had to be banded, I can still have good day however as I am getting older the fatigue just hits in on me in the afternoon feel really tired.

This is an excellent site so talk to people who will support you and let you know you are not on your own.

Jan xx