Hair loss ? Pbc or urso?

I was diagnosed with pbc three years ago - I'm at quite an advanced stage of the disease but not quite ready for a transplant and I have been taking urso for a year and a half .

All of a sudden since September this year I've had horrendous hair loss- my consultant said he didn't know what could be causing it for months and now says it is probably the urso. Is there ANYTHING AT ALL to be helped with this? I can't stand it as I feel so gross ! Please help

29 Replies

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  • I feel the same as you, it's the PBC that causes it I think as quite a few of us have it and some are not taking urso, mine started to come out before I was put on urso.

    According to my GP there is nothing to help with it unless you buy it as its now been taken off prescription, can't remember the name properly I think it was something like minoloxin, its quite expensive and you have to keep using it, it makes the hair follicles bigger so the hair can re grow but it can also make the pores on your forehead bigger so you have to be careful with it.

    I was also told Vit D could help but i take it and it doesn't.

  • Ok well I'm going to see a dermatologist soon so will ask then if they can prescribe something - I just don't get why it's started all of a sudden ! It's very distressing along with my yellow eyes! I just want to look normal - thank you x

  • I have yellow marks round my eyes but am told my cholesterol is okay.

    Most days I don't even want to go through the front door after I look in the mirror in fact i don't go through it.

  • Hair loss was one of my first clues something was wrong - I discovered it last January. I have a patch on my head about 2 inches by 1 inch that is completely bald now. I have both PBC and Lupus, and the rheumatologist that I see believes the hair loss is associated with Lupus. I have seen a dermatologist and he gave me a steroid gel, but it didn't do anything. He did say the hair loss was most likely permanent, meaning the hair follicles are gone in that zone. So.....I would say mention that to your doc next time you're in and see if they can follow up on that as a possibility.

  • Oh No...I noticed hair loss recently ...my hair is thinning rapidly and I have a bald spot not bad though ...YET

    Such is life eh.... I am seeing my specialist in March so will mention.Thanks for the heads up!!

  • Hi, I too am suffering hair loss, i never even thought about my pbc or urso. Thanks guys i will look into this, this website is a god send, I would never have known so much with out it, and I am glad I'm not suffering alone. Reading a lot of things on here and I must say I reckon we know more than the specialists. Maybe they should read this. Xx

  • Me too. My hair started thining before diagnosis and has continued to thin out since my diagnosis in 2008. I have re growth along my hairline at the front so it looks funny. I have a short bob and the re growth sticks up through my style. I have done research online and the hair loss does seem to be associated with PBC and also a side effect of Urso. I've decided to have a short hair cut now. I've been reading up on natural treatments and I'm going to try a hair oil that Fushi sells online. I think it's called Really Good Hair Oil. It sounds lovely so even if it doesn't work I think it will feel and smell lovely. Best wishes to you all. Xxx

  • Hi there, I too have hair loss but it is not because of PBC it is another immune condition. I have been using Alpecin which is for men and a conditioner with hair thickening and I can now say that my hair is starting to come through. I don't like some of my pictures as it shows me with a balding at the fron but hair has started to come back. Also stree can cause this. I know it is hard but it does grow back but might take quite a while. xx

  • I try to avoid nasty chemicals and especially Sodium Lauryl Sulfate (SLS), Sodium Laureth Sulfate (SLES), which are usually in shampoos and very nasty. This is the hair oil I'm going to try

    fushi.co.uk/really-good-hai...

    Hope it's ok to put that link here. Although I have re growth along my hairline at the front, my hair remains generally thinned out and I want to thicken it and hopefully stop it getting worse xxx

  • I go through cycles of hair loss, not sure what is causing it, but just after the summer this year my hair has fallen out and its quite noticeable because my hair is thin. Tessa that SLS sounds interesting I'm going to check my shampoo to see if it contains, thanks for the info xx

  • You're welcome TracyLou. I'm just trying to go all natural, eliminate nasty chemicals from my toiletries etc. xx

  • Ask your doctor to test for your thyroid function, as hair loss is a symptom of an under active thyroid and my consultant said there are links between an under active thyroide and PBC. It's worth being tested as you'd be prescribed thyroxine and your hair loss would stop. Also if you do have an under active thyroid you would be entitled to free prescriptions with a medical exception.

  • Problem is Lynne that even if you do have an under active thyroid and then take thyroxine, it remains the case that hair loss is also associated PBC and is a side effect of Urso so the hair loss/thining may continue anyway

  • I have an underactive Thyroid and also PBC , and was told these autoimmune go hand in hand, so always worth getting a check up if you have one of these, My hair comes out ,but hopefully not bald yet, Im 72, and was diagnosed 10 yrs ago, itching and fatigue are getting me down, Im on vit d3, so hoping these combat some of the problems,if anyone can recomend anything else to combat these problems , would be more than pleased to hear.

  • Hi mylo2, I have itching and fatigue also. I am newly diagnosed and haven't been on urso,for very long. I have noticed that anything with menthol in it helps with the itch, i shampoo with selsun blue. It has menthol in it.I have dryskin so when i shower, I rinse off then put lotion on all over except for my face and scalp, while still wet from my shower. Then I rinse off really quick in cold water. When I get out and towel dry, I take "GoldBond" medicated pòwder and put it all over myself. It does help some with the itch, for me. I also have noticed hair loss around the area of my part. The fatigue, all I notice if I fight it, it's worse. But if I just give in to it and just rest, it's better in a day or two. Best wishes that this might help.

  • hi - I have been through a hair loss phase for several years. My GP suggested Floradix by Salus. Its a natural iron tonic (as well as containing many other things) and slowly my hair has regrown until now ( a year later) it is nearly back to normal. When you have an iron test and get told its normal by the doctor, it can in fact still be low enough to cause problems.

    Might be worth a try?

  • Interesting, thanks Val, I might try that too xx

  • I have an under active thyroid but I take levothyroxine and am actually taking slightly too much and my GP said its ok as it helps with my fatigue - I hate everything that the Pbc has made me look like but the hair is the worse. I don't care if I have to pay to sort it, I have found it so very distressing - ill try a few things you lovely people have suggested , thankyou - I'm not coping well at the moment at all xx

  • Hugs Perky, sorry to hear you're having a bad time with it at the moment. Do you belong to the Facebook PBC group too? It's another place to chat, share info, ask questions, get support, have a rant, have a laugh etc. xxx

  • Sending you lots of hugs and prayers xxxxx

  • I had this hair breaking off and loss before my diagnosis of PBC. I have tried all Kinds of shampoo and conditioners nothing works. I will take all of your suggestions and speak to my doctor. I thought the warfin I take for my APS. It just maybe the Urdosol as suggested. It makes more sense since it has been going on for a while.

    Thanks again

    Lexi-ing

  • So sorry you're feeling so bad, Perky.

    I would guess that - as not everyone with PBC experiences hair los - then it is worth following all the other investigations suggested here. It may be that your hair loss is due to one of the other causes: eg underactive thyroid, lack of iron (or any other vit or mineral deficiency), or something as yet not suggested: so ask for every possible test. My friend is a coeliac (has to avoid ALL gluten) and one of her first indicators was hair loss, which in her case was caused by iron deficiency, and now her hair is as gorgeous as ever. I'm at risk of PBC, but so far just test +ve for amas. However, last Xmas I was ill for weeks, with first a coughing virus, and then a vomiting bug. With one thing and another I hardly had any food for nearly 2 weeks, and in the weeks - months - after my hair got really thin. I was worried that it could be PBC triggered by the virus or stress, but my annual LFTs were fine. Gradually, my hair has grown back better than before, but the scare has made me be even more careful about my diet. It's worth checking every avenue.

  • Ok - my consultant is very good so I'm

    Sure he will help in anyway he can - I can just about cope with everything else but this has been the worst.

    My confidence is terrible at mo - thank you all for your advice and support - my friends and family just do not realise the impact this disease has on me x

  • Not sure if anyone mentioned this, as there are so many responses here to go through- but really consider anemia. Every time I get low iron my hair starts falling out and I start craving ice. My sister has the same symptoms. I was on urso during pregnancy and thought for sure that it was the urso, but then after 5 days of heavy duty prescription iron the hair stopped falling out. Now I am having it again and sure enough my iron stores are low. Just a thought! :)

  • also people with thyroid are more apt to have anemia (just was strolling through some of the responses now...saw your thyroid comment. and same here- i have hypothyroid)

  • I experienced massive hair loss over the summer and bagged the clumps of hair and took it to my rheumatologist, gastroenterologist and dermatologist. My rheumy felt it was stress from the recent diagnosis of PBC and from having other AI diseases, my gastro said vitamin deficiencies (I tested very low in D) and he put me on treatment and also suggested taking Biotin. At this time, I am NOT on Urso following a liver biopsy because my LFTs', ALP etc. are still relatively low. The dermatologist feels my hiar loss is diet related because I show a series of skin problems (rosacea, dry cracking skin, etc) and hair follicles can often mirror what's happening on your skin. While I didn't get clear answers, I continue to take the suggested vitamins, wash my hair in cooler water, and drink plenty of fluids to aid in hydration. The loss seems to have subsided and I can see some new hair growth. It's amazing how we all can share symptoms, yet react so differently.

  • Since being diagnosed with PBC a few years ago I seem to be collecting other auto immune diseases. One of them is Alopecia Areata (diagnosed by a dermatologist) which is auto immune hair loss. I get these huge bald patches and end up shaving my head. Eventually it starts to grow again till it happens again. I am getting used to it now.

  • Isn't there anything hormonal they can give ? I'm

    so distraught - I can just about cope with all the other things I have going on- which is alot but this is the one I cannot accept :( I feel so unhappy- I thought I'd be in my prime in my 30's and instead I've been suffering all of it with this disease , the other diseases that go with it and all the symptoms!! I'm

    Hoping if my transplant goes well this problem will be corrected - even tho I know I will be swapping the set of problems I have now with a new set altogether!!!

    Thank you all for your comments

  • Same here, I've been experiencing hair loss for years, now it's gotten so bad, I can't hide it at all without a wig. I saw a dermatologist about 2 years ago. He did a scalp biopsy. He said it was caused by an over active hormone called antigen, and to use Rogaine to block the effects of it. I did, for about a 1 and 1/2 years. I stopped for about 4 months, and now am really thin. I have gone back on it. I know we don't get the benefits of our vitamins and the ursodiol probably makes it fall out also. This is one of my big stress worries.

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