PBC symptoms

[Millie200187]

Good evening all,

I need a little assistance, if anybody can help. In January of this year I was diagnosed with PBC and been trying to understa d the bigger picture of dealing with PBC however; one question that my specialist can't really answer and that is does loving with PBC cause hair loss, could anybody help me?

My hair is falling out to the extent where I have started to develop patches of scalp with no hair.

Please can anybody help me? I am only 29 and feel so low not only to be dealing with PBC and the potential of having cancer as well I have also got to deal with hair loss and I know worry can cause hair loss but I need to eliminate symptoms of PBC.

Thank you in advance for reading this post.

Millie ☺

[Yarnie]

Hi Millie,

I was diagnosed with PBC when I was 29. I started to lose my hair too, it was just small patches but after a while it subsided.

I ignored my condition because my life was too busy, I cancelled appointments at hospital and kept my condition to myself. Until one day it was too late and became very ill. Less than a year later I had a transplant. I'm 3 years post transplant and feel great except I've started to develop bald patches again

I will always have PBC as transplant isn't a cure but I do take my health a lot more serious. Try rubbing coconut oil in the patches, I do it seems to help. There's lots of information online about coconut oil and it's safe to use.

Also try not to let PBC take over your life, control it best you can but live. I was told when I was diagnosed, your more likely to die with it than from it.

I'm 43 now and extremely grateful to everyone who has helped me through a tough time.

Hope that helps

Take care

Lisa

[PCBnPBC in reply to Yarnie]

but dont ignore it, "treatment" and URSO in particular can help. Doctors often have little understanding of this very rare condition, get a consultant who does have experience (transplant centres are good, Newcastle Freeman are PBC experts.

[Millie200187 in reply to Yarnie]

Thank you for your reply, will coconut oil cause my hair to look greasy after use?

This might sound a silly question but do I just rub it into my scalp and leave it?

[Yarnie in reply to Millie200187]

Just rub it into your scalp, on dry hair before you go to sleep. Rub the coconut oil in your hands to emulsifiy it, then rub it into scalp. Leave it over night then wash your hair as normal. I use it all over hair too but that's for dry hair nothing medical 😉. It doesn't feel too greasy just remember less is more!

I don't know if you have a B&M store near where you live, but I bought a large jar for £1.50.

Hope that helps, good luck.😊

[Esmerelda62]

Hi Millie. What does PBC stand for ---is it liver related ?

[Auds5 in reply to Esmerelda62]

PBC stands for Primary Biliary Cholangitis formerly known as Primary Biliary Cirrhosis a Non-alcoholic Liver Disease.

[Auds5]

Hi Mille.

So sorry to hear your dealing with so much at the moment. I understand how frustrating and distressing hair loss can be. I too have be diagnosed with PBC (aged 37) and have noticed my hair is a lot finer and doesn't grow as quickly, but thankfully no bald patches. I have blamed this on the disease/medication. Because PBC is quite rare I find a lot of the medical profession don't truly understand the disease and its symptoms. Although I finally (after 6 years) am in the care of a great Hepatologist.

I find this forum fantastic for answering questions or queries. If your not already a member of the PBC Foundation then I would really recommend you join them too. LIVErNORTH is another great one to join and have a great DVD about PBC which is useful for family and friends to watch to get an understanding of the disease.

Hope this is of some help to you.

Take care

Auds5

[Millie200187 in reply to Auds5]

Thank you all for your replies they have helped me understand I am not in this on my own because there are people in the exact same situatio as myself.

Thank you again