PBC Foundation
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Hair Loss

Quite a few of us, on this forum and other sites, have mentioned how much hair loss they have suffered. My hair has always been fine and thin but with PBC and age the top of my head is sparse to the point where it worries me especially when there are strong ceiling lights. I have been investigating the possibility of a hair piece when I came across a product called Toppik. I have looked at one or two You Tube videos which make the product quite appealing. Before I go ahead and purchase a small tub for trial I wondered if any of you lovely people out there have tried this product and what your thoughts are about it.

I am siting the Amazon page as I hope this will be a safe link if anyone wants to look.

amazon.co.uk/TOPPIK-Hair-Bu...

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Always consider, whatever you put on or in your body goes through your liver, as it your body's filter.

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My friend used this stuff extensively and suffered permanent lung damage from inhaling the fibres. My hair has gone terribly thin but there’s no way I’d used this stuff. My solution has been to cut my hair extremely short. I miss my long hair but it’s no longer looking so thin and lank. Good luck!

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Thank you tinypixie this was the sort of knowledge I was hoping to find

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A good point Hidden thank you

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I'm wondering now if hair coloring is safe to use since it can be absorbed through your skin , can it affect our liver? What about the creams we put on our bodies... Bengay and moisturizer? Asked a assistant gi dr and she said not to worry but I don't think she knows much about pbc.... Even had a dr come in to talk to me because I was throwing so many questions at her she couldn't answer but he hardly let me question him

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Hi Yankeerose3

I think I read somewhere a while back that colouring hair may be an environmental trigger. I think LiverNorth recently asked their members to look out for IMIDAZOLIUM which is being investigated in a study and to report if members find this in their products.

Without wishing to be disrespectful to the medical profession I believe where PBC is a rare/uncommon disease it is only the people who are specialising in PBC such as Professor David Jones in Newcastle who have a better understanding of PBC which, in my opinion, forums such as these are so important for sufferers to share their personal experiences. I am fortunate to have a really lovely hepatologist but his specialty is AIH but he never belittles my attempts to help myself. Unfortunately many of us have experienced the same sort of attitude as you have met.

best wishes

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Thank you very much

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I think if you don’t do the single process dye; it is okay. I do Highlights & it doesn’t go to the roots or scalp, only the hair. & I only do this once a year.

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I used this some years back, my hair started thinning in my forties nothing todo with PBC or urso. However I found I could see where I put it and it looked matted ( rather like iron fileings on a magnet if you remember that from school) I found it difficult to apply, so I never used it again. But you may have more success.

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Thank you candy12 I was not sure from looking at You Tube that it would be so easy to manage I think your comment it confirms my thoughts.

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Hi - my cautionary tale is that I have always had thin hair and my hairdresser recommended a vitamin called nutradol. I took it for 18 months and was thrilled with the results. But then I was diagnosed with pbc and wewonder if it may have been triggered by the nutrafol. Ugh! One product that helps me optically with the scalp is bumble and bumble dry shampoo. It comes in colors. My hair medium brunette and I use the dark blonde one and it helps to cover my scalp - not cheap but makes me feel so much better . Google you will see it’s very popular for this purpose. Xox

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Hi Ottley3

thank you I will have a look. some have cautioned against the Toppik siting very good reasons especially for us with PBC so its good to have an alternative to look at.

best wishes

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I've been told that a nightly application with Castor Oil, left on overnight, will regrow hair. That means I would have to wear a plastic cap to bed and wash my hair every morning and I'm too lazy for that! I imagine it would also depend on what caused the hair loss in the first place.

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thank you Hidden I cannot imagine going to bed in a plastic cap :-) but it conjours up a pretty mental picture! :-)

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My hair, is fine and thin too. A while back someone on here recommend a product called Nioxin. It’s a shampoo, conditioner and a serum. I’ve used it for about 18 months now and I’ve definitely seen the difference in the amount of hair in the bath when I’ve showered. You can get it from Amazon. It may seem a bit pricey but you only need a tiny bit and it lasts for ages. ❤️

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Hi Jules-S

I can see from your photo that you are fair haired. May I ask which system you use. I am looking at the Nioxin System 6 as I have my hair highlighted with blond streaks.

thank you.

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Sorry for the late reply. I use 3. It’s for fine, colour treated hair.

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That's great - thank you for the information.

best wishes

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