Is my PBc causing all this or is it the med... - PBC Foundation

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Is my PBc causing all this or is it the medication ?

Jennied66 profile image
Jennied66

hi all, since being diagnosed with the pbc and taking the Urso tablets, my hair is falling out so badly, i have pretty longish hair and is now so thin i dread washing it and is upsetting me i also have psoriasis so i use special shampoo, is it the pbc or medication causing this and will it eventually stop ? Also for so long now i have had mouth ulcers i would say at least once a month very sore again is this the condition or meds? thank you

21 Replies

Sorry to read of your hair loss, for me it turned out to be another autoimmune condition. I had a referral to a dermatologist but it could be a thyroid problem which often goes with PBC.I associate mouth ulcers with being run down, it is not something I have had much of perhaps a word with the doctor is in order. Not everything is PBC although there are conditions such as thyroid or Sjorgren's that can be associated.

Hope you get it sorted.

hi thanks for your reply, i do have many other conditions and underactive thyroid is one of them

Hi Jennied66My hair loss did settle and my hair dresser keeps an eye on any changes. I have suffered from Ulcers in the mouth since a child so don’t think that it is pbc connected but who knows . I have psoriasis and I used the shampoo but find the lotion /oil less abrasive to my hair . I am lucky that the psoriasis isn’t an issue just now which could be to do with the immunosuppressants x

Jennied66 profile image
Jennied66 in reply to Angel46

thank you yes i understand what you mean, i used to be so stressed with my psoriasis but that seems less important now, but its interesting as its also another autoimmune problem

Hair Loss can be caused by a deficiency in Vitamin D. Liver diseases such as PBC can cause you to be deficient in Vitamin D. You could try taking Vitamin D supplements as a first step. You should, of course, check with your consultant that the Vitamin tablets won't affect any medication you are on. I hope this helps. Take care

Jennied66 profile image
Jennied66 in reply to SheepJane

yes i had vitamin D deficency years ago, but gp said it was fine and took me off them, i try to sit in the sun when its out, thanks

I had thyroid autoimmune problem well before PBC. I started to experience hair loss before I went on URSO. So, I can't blame URSO for it. I have been taking Vit D supplement for a good number of years. I'm also on they thyroid medication. My hair is definitely a lot thinner than it used to be, especially on the sides. I cut them fairly short and try no to think about it. Hope you feel better!

Jennied66 profile image
Jennied66 in reply to iagra

yes i think your right , i think i may be overthinking the hair loss too much, perhaps its not as bad as i think, but its just thinnning

I have had hair loss since being on Ursodol also. I’ve had to cut 5 inches off in the last 3 months. I hope that it settles down soon like a lot of posts on here say.

yes i think so too, i am hoping it will too thanks

Hi.

I have regular mouth ulcers too, not sure if it's pbc, but I have very dry eyes and mouth so it maybe sjorgrens. I'm on several drops/ointments for my eyes but for my mouth I just keep siping water.

Hope you get sorted.

Nelly

Jennied66 profile image
Jennied66 in reply to Nellies47

hi yes i am just like you, i have the same, yes they gave me Isopto for my eyes, but my mouth i am just using bonjela, its just awful isnt it

Nellies47 profile image
Nellies47 in reply to Jennied66

Yes, it's all about management. But sometimes I just tired tring to be OK and up beat about it all.It's good to have this page to see we are in this together.

Hope your OK.

Nelly

I read somewhere that the brand name medication for Urso seemed to have less side effects. I have tried this and I continue to lose hair but not as much. The shower drain doesn’t lie so I will continue with the brand name for as long as I can.I get mouth sores too but the cleaner my diet the longer those stay away and when they come hydrogen peroxide used as mouthwash helps shorten their duration. Gluten free diet made large difference in my how I feel. Vitamin B complex, vitamin C and D are also very helpful. Try some things and see what works for you. I wish you great luck in finding something that helps.

Jennied66 profile image
Jennied66 in reply to SuperJo

thats a wonderful tip, about the mouthwash, i will definately try it

Nellies47 profile image
Nellies47 in reply to Jennied66

Hi. Thank you.

Sorry for your troubles. Just wanted you to know I have had PBC and been on Urso for years and do not suffer from hair loss or mouth ulcers. Makes me wonder if something additional might be going on. Also stress can be a factor.

Jennied66 profile image
Jennied66 in reply to Q8Cooper

yes it could not even be related, i have had mouth ulcers bad since my original diagnosis with my liver damage over 7 years ago, so im proberbly over thinking thanks

I used to suffer badly with mouth ulcers and other skin sores that would crop up whenever I was under the weather. The skin sores looked like chicken pox. Doctors always just put it down to me having an autoimmune condition and getting opportunistic infections, but that never made sense to me. Then around six months after having my son, and having a huge spike in my bloods probably due to not having been on the urso during pregnancy and also having a drug induced liver injury, I had a REALLY bad outbreak all over my skin and in my mouth. More investigations were done, and it was thought I had vasculitis or Behcets or one or two other things. I never got a firm diagnosis for the skin issue, but a dermatologist prescribed doxycycline, which I still take to this day. Nowadays I do sometimes get mouth ulcers and skin sores but far fewer, and I haven’t had another big outbreak. I’m also under a rheumatologist as well as a gastroenterologist but am currently more or less stable.

Jennied66 profile image
Jennied66 in reply to Smarties18

thats good that your stable thats good news, yes i think i have too much going on in my body with my illnesses, i think its my body crying out for a break, thank you

Smarties18 profile image
Smarties18 in reply to Jennied66

My rheumatologist came to the conclusion that there is some autoimmune issue affecting my skin and it may be the same thing that affects my liver or it may be that I just have a separate autoimmune condition. Either way it could be something they’ve not yet ‘discovered’. Either way the treatment seems to be keeping it in check. Good luck with your treatment!

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