PBC: Eye problems and scarring on skin?

[jb06]

I was recently diagnosed with PBC - June 2015. Prior to the diagnosis I had been itching for about 18months but I put it down to other things - as my itch is predominantly concentrated on my feet I blamed the heat, the cold, athletes foot, fungal nail etc etc until it became unbearable and I consulted my GP. The GP diagnosed similar and said it was contact dermatitis too so I spent months applying creams unnecessarily which achieved nothing.

I eventually went back to my GP last September with three small but annoying symptoms - one was the itch, another was repeat and constant styes on either or both of my eyes (at least every 10-14 days), the third is a series of red marks which I'm getting on my arms and legs. Basically If I scratch, bruise, knock, mark my skin or get a spot I'm now left with a very inflamed mark which never heals - some days they are pinky/red, other days they look like burns. People have actually asked me if I've had cigarettes stubbed out on my arms! Due to these things combined, constantly being told by people I look jaundiced and/or I am a terrible colour, and finally the fact I have had family members pass away with liver cancers, they started looking further.

Diagnosed with PBC in June and so far I've been taking the medication about 2 weeks or so (colestryamine and ursodeoxycholic acid). The colestryamine/questran is a bit like swallowing sand or grit but I've just been using fresh orange juice with it to try and mask the taste. It's not pleasant but hopefully I will see an improvement.

The hospital seemed to gloss over the marks on my skin and my eyes. They said the marks were not liver related and referred me to a dermatologist and said nothing at all about my eyes. I'd be interested to know if anyone else with PBC has similar symptoms?

Thanks

[Kiras]

I have all of the same symptoms except the eye issues. For the itching, i have cut back on my urso because it made my itching worse. For the questran, mix it in a thick juice like a naked or boathouse juice or in apple sauce. It really gets rid of the taste. Also with the thickness of a natural juice or smoothy with fruit you will not notice the grit feeling. For the marks on your skin, I have discovered that washing with a wash cloth and then applying Lubriderm lotion to your slightly wet skin helps. I put it on my whole body and give it about 5 minutes to air dry before getting dressed. This really helps. For the itch on your feet, I have an odd suggestion. I know it sounds crazy, but rub your feet on the concrete or cement curb outside your residence. It sounds crazy and you will look ridiculous...but the relief is worth it. Plus it will exfoliate that flaky skin from your feet. When you feel you have satisfied the itch on your feet, put your feet under running cold water. Lastly rub a good layer of lotion on your feet and put socks on for about 30 minutes. Not only will you have soft feet, but the itch will be much less if not gone. Again this is what has worked for me. I am 28 and i have been diagnosed for almost 2 years. I hope this helps and good luck. Lastly, my doctor prescribed zoloft to help with the itch also. And i stronly recommend it.

[jb06 in reply to Kiras]

Your reply made me laugh - I've been telling my family that I am eyeing up the gravel outside our home and may rub my feet on it as I think it will relieve the itch! I'm definitely giving it a try now.

Thanks for the information - I will look up the suggested creams/lotions. Anything is worth a try. Thanks again

[Kiras in reply to jb06]

I just hope it is helpful. I did forget to mention, staying positive day to day. I know at times this can be very hard, but things just always seem worse when you can't be positive. For me, I just take it one day at a time. Seriously...try to find happiness in small things. Its not worth living and dealing with this if you cant find peace with your diagnosis. It is so easy to get sucked into the negative. Trust me, remember i was diagnosed with this at 26, it sucked and still sucks. But i have realised being sad, upset, agree, and depressed wont change things so why waste my time. But by taking thing day by day it isnt so awful.

An example:

Today I went grocery shopping. Pretty normal nothing exciting about it. But while at the store...I noticed they had gotten in peaches. No big deal right. Wrong...I LOVE PEACHES! I looked kinda crazy, whats new, standing in the store and sniffing like 5 peaches just enjoying the smell and the familar feel of the fuzzy skin. So before i did any shopping, i bought 6 peaches, asked a guy in the deli if he would wash them for me, and did my shopping while enjoying fresh peaches.

Like I said, i probably looked silly standing there smelling the peaches and then eating them while shopping, but it made me happy. What do I care what others thought?

The saying "take time to smell the roses" really sums it up. When life sucks, it is the small things that make it bearable. And being able to finds small random things around you that make you smile could be the difference between living life and enjoying life. So if you are ever at home depot and you see a random person stopping to smell the flowers, rubbing the display rugs, and getting excited about the different colors of oops paint (it may be me 😉!!!!) laugh a little and join in the fun. Laughter is the best medicine.

I assure you, you can live a some what normal life with PBC. It is all about how you approach it. Best of luck, and pleaee feel free to send me a private message if you ever just need someone who knows what you are going through to listen.

[jb06 in reply to Kiras]

I'm assuming your'e in the USA - I'm across the pond in Liverpool, England. So I may not bump into you shopping any time soon, one day though.....who knows.

Keep smiling and sniffing those peaches! !!

Thanks again

[Karaliz in reply to Kiras]

Love your positive message Kiras 😉 thanks

Karaliz

[Kiras in reply to Karaliz]

You are more than welcome. I know somedays are a battle for me and i just need to be reminded of these simple things. Thought it might help others also.

[Boysgran3 in reply to Kiras]

Try grapefruit juice for your itch. It really works for me 😀

[badpiglet in reply to Boysgran3]

Hi Boysgran3,

Just flagging up a warning that you may not know about concerning grapefruit juice - it can interact with many medications.

It's quite important to always check with your doctor before taking it to make sure it isn't going to cause a problem with anything else you might be taking or condition that you might have.

[Kiras in reply to Boysgran3]

Like drinking it or rubbing it on your skin?

[teddybear7]

I have marks left after any thing spot scrach cut etc. Too I use e45 after every shower/bath. My eyes... Have an eye test mention that you have PBC I have drops now as I have dry eyes didn't know till they saw all the scratches on my cornea at the optitions which opens you up to eye infections. Xx

[jb06]

Thanks for your reply. The oldest marks on my arms are over 5years old, they never fade just go between pinkish or violent red. E45 is a cheap option that's easily available and one I must admit I had not considered. I will give it a try.

I will also look into an eye test. Thanks again

[PBCFoundation PBC Foundation]

Good afternoon Jb06,

I have sent you a private message

Best Wishes

PBC Foundation

[happyh13]

Hi I am in Australia. What is e45? I have had bad itching on and off over the years. Yes, the little red capillary marks left on my skin don't go away. Now I have many "liver spots" or age spots on my skin and no-one is interested in doing anything about them. Shame I am only 53 but look in my 60's. That may be the Aussie sun from sun bathing when younger though!

Regarding the dry eyes. Do you have a dry mouth too? There are things in the chemist that can help, but the real solution is lifestyle. But the less you stress, the better your sleep, the more humid the air you are in, the best quality food you eat these things will go away or decrease dramatically.

Look up xanthomas in the eyes. For me they were orange lumps of fat in the corners or my eyes. 3 months on a colloidal mineral supplement ( lots of trace minerals) and a broad spectrum antioxidant and multivitamin got rid of them for good despite my PBC progressing.

Hope this helps.

[jb06 in reply to happyh13]

Thanks for the information.

E45 cream is available to buy over the counter in UK chemists and pharmacies. It's like an emollient for dry skin conditions but is very cheap and spreads a long way. Can be used for children and adults alike.

Regarding my red marks I saw a dermatologist this week and she believes they are basal cell carcinoma - a type of skin cancer due to over use of sunbeds when I was in my late teens and early 20's. I'm 40 now and haven't used sunbeds in many years but I suppose the damage could be long done. I go for a biopsy in a few weeks to confirm so fingers crossed it's something else.

Re my eyes I'm waiting for them to flare up again then I will go and see the local eye hospital - St Paul. The redness comes and goes every few weeks - looks like a cluster of styes then passes. I also have xanthomas above and below both eyes, have had some of them in excess of 10yrs. I'd be interested to know how you got rid of yours.

Thanks