PBC: Hi I’m becks and I have PBC , Was... - PBC Foundation

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PBC

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Hi I’m becks and I have PBC ,

Was diagnosed 2016 , I’m on urso 1000mg a day ,

I have tolerated the meds very well , however since Feb this year I have developed a skin condition on my right hand , I’m currently under the hospital and awaiting an allergy test , have had biopsy which is negative to anything sinister ,

I can upload pictures of the different stages my hand has gone through as I was asked to keep a photo diary ,

I was just wondering if anyone else with this condition has had anything similar , thanks in advance 😊

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18 Replies
butterflyEi profile image
butterflyEi

Hi Hidden

Welcome to the group.

I have not experienced anything like that. Hopefully the allergy tests will give you an answer unless someone comes along shortly with a similar experience.

in reply to butterflyEi

Thank you 😊 it has been a trying time as I have been very potent to mild topical steroids and in the summer I was put of prednisone oral steroids , I didn’t think much to that because I am careful in what meds I have to take , but apparently the skin condition out weighed the need for steroids so had to go with it ,

I’m also on tramadol due to having a tooth extracted on Tuesday and I have developed what has been diagnosed as a dry socket , the pain is unbearable and unbelievable, but hey ho onward we go 😊👍🏼

EileenUSA profile image
EileenUSA in reply to

Hi, just wanted to send you support. With our PBC alone it can be much to manage/deal with.. then when other medical issues pile on it's just too much! Hope your tooth simmers down.. hugs.

in reply to EileenUSA

Thank you Eileen that’s very kind of you , oh so do I , it was totally out of the blue , but it was far to painful for it to be ground out and re filled , I felt everything after 4/5 injections , I have a fear of dentists anyway but this is just blown that fear into oblivion 😢,

Your right it’s all too much sometimes but you carry on ,

I wish you all the best and take care x

ninjagirlwebb profile image
ninjagirlwebb

I had this rash on my forearm in 2016 for a few months & we didn't know what it was. My dermatologist prescribed hydocortisone & I starting to put a huge wrap to cover my desk at work before working on it. I think I was allergic to whatever it was that they used to clean the desk. The rash looked like a burn. Even my hepatologist was freaked out by it when I showed him. He told me, you need to see a dermatologist right away. Anyway it went away after a few months.

Skypony profile image
Skypony

Hi becks, sorry to hear you've been having a challenging time. Along with PBC I have other autoimmune illness including various inflammatory responses of skin and soft tissues. These are more annoying/uncomfortable than serious. Biopsies have tended to show an accumulation of neutrophils or other markers of inflammation which don't necessarily point to a named condition. But I use steroid creams sometimes and they can help.

Not sure if you're wondering if Urso is connected to your problem, but I'd guess not. Hope things get resolved for you soon, and best wishes.

in reply to Skypony

Hi skypony ,

Thank you for your reply , as you say challenging !!!

I’m sorry to hear you also have skin issues. Not sure if you were embarrassed by yours but I was , I go out with a bandage on , not only because I find it embarrassing but I don’t want to be picking up infections , I’m trying to find a way of putting some photos up but not sure how too 😐

I’ve had so many creams , lotions and potions I have a kitchen drawer full of them 😬 but I’m hoping now that things are settling down a bit now ,

Once again thank you and I wish you well x

Skypony profile image
Skypony in reply to

I've been lucky that mine hasn't been noticeable to others really. Glad your problem has improved, and remember to avoid stress as much as possible.

in reply to Skypony

Glad to hear it , and thank you 😊,

As for stress ..... I’ll try x

Hi ninjagirlwebb

Nice to hear from you ,

Mine started off looking like psoriasis/ eczema and that’s what the g.p first thought , then the appearance of my hand went through rapid changes from weeping cracks to pus filled lumps , which a couple of them turned out to be abscesses ,

But thankfully things have calmed down now , but I don’t think it’s an allergy , I’ve done my own research and because of auto immune disease

It’s possibly related .

Glad your ok now . 😊

ninjagirlwebb profile image
ninjagirlwebb in reply to

You might have some other autoimmune issue which is not pbc related. I have scalp psoriasis as well. It was that one time & then it is fine now. Dermatologist prescribed an antibiotic cream for scalp & recommended that I use Neutrogena T Gel shampoo.

Hopefully they can figure it out for you. Sounds so painful. Is it only on one hand? Sorry that this is going on for you.

My skin has always been quite sensitive as well. I once got sun poisoning when it was too hot & humid. This happened when I was in Asia in the Summer. My arms reacted with these bumps that are pus filled & I was itching like crazy. I had intended to see a doctor the minute I got home. However as soon as I got back to the US, my skin was fine. So I think it was the intense sun, humidity, & air pollution in Asia.

Haley

in reply to ninjagirlwebb

You could be right there ,

And yes it’s on one hand , on the back of it and on the wrist.

And itch like crazy , then it is painful.

It bleeds , it’s been rather a testing time ,

Hopefully it will get resolved !!

How in lucky for you to get sun poisoning 😱 , glad it settled down once you got home ,

Problem is though there aren’t many anti histamines we can have with pbc , because that stops itchy inflamed skin .

ninjagirlwebb profile image
ninjagirlwebb in reply to

Ask your hepatologist if you can take benedryl or allegra. I take it sometimes for allergies.

Hope you get issue resolved soon.

Jeanb47 profile image
Jeanb47 in reply to

I’m sure your doctors have thought about gluten intolerance. Mine should up as a skin rash. Google it. It has a long name but it related to gluten. Some have digestive symptoms, some have skin

4pjx__ profile image
4pjx__

Oh man, well, at least it isn't anything too horrible but I agree it would be good to know the cause. I have had my fair share of odd rashes that come and go since starting Urso but it's always hard to say what the actual cause is/was.

Pam❤❤❤

in reply to 4pjx__

Hi 4pjx

Thank you for your reply,

Absolutely need to know what the actual problem is as it was really unsightly but the g.p first thought it could be pompholix which is a severe skin problem when you have a auto immune problem , I’m sure once I’ve had the allergy test done and I get results if there are any I will keep you posted ,

Wishing you all the best x

SunnyXXOO profile image
SunnyXXOO

Dry socket: This happened to me with a wisdom tooth.

Apply the paste to the socket for 30 minutes before removing and rinsing with warm water. Turmeric – Turmeric is a natural pain reliever and anti-inflammatory. Mix 1/2 teaspoon of turmeric with a little water to make a paste and apply it to the dry socket. After 20 minutes, rinse the area with warm water.

Good Luck

SunnyXXOO

in reply to SunnyXXOO

Oh thank you thank you , I’m desperate , i can’t take ibuprofen or anything like that so I’ll give this a shot thank you sunny xxoo

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