Hair Loss with Urso

[happy0507]

I have been on Urso for 9 months and I am non responsive. I am on the highest dose available and have bad side effects such as my hair falling out. Has anyone else experienced this?

[Ktltel]

Happy0507,

My Alk-phos numbers have been the same since last year. It fluctuates btwn 136-178. But my other numbers are in normal range so far. And YES... My hair is falling out. First time ever my husband had to unclog shower drain. 😔. All my hair. 😢 But I'll take it if I can slow this disease down. ❤❤

Stella

[gwillistexas]

I took it for 8 days & mine was coming out. 🙄 but no longer on it & no more hair coming out👍

[Twojer]

Happy0507,

I started Urso in March when I was first diagnosed after spending over a year having tests to determine what was causing my elevated ALP—I am AMA, ANA, and SMA negative

My ALP also hasn’t normalized. About 3 months ago I started noticing my hair was coming out in great quantities. When I washed my hair it would be all over my fingers. My hair is everywhere in the house. I did notice that it seems to be breaking off rather than coming out at the roots. I can’t exactly explain it but it seems like there is a tearing sound when I comb it

I can tell you what I have done in the hopes of helping my own issues but please don’t consider it as medical advice. There is always the possibility that your hair loss may be caused by something else other than Urso. You should consider contacting a dermatologist. I have made an appointment with mine but they do not have an opening for several weeks.

I ordered some biotin shampoo from Amazon I also started taking biotin but not in megadoses . I read a report that biotin can throw off your thyroid tests endocrinenews.endocrine.org...

I have started washing my hair less frequently and using slightly warm not hot water to wash it. I use a wide toothed comb not a brush and hold my hair at the crown and gently detangle any knots I encounter. I also had my hair cut a couple of inches. It seems like in the last week I am seeing less hair in my comb. 🤞🏻 (Keeping my fingers crossed)

[IAmTheGlue]

I've been on Urso a little over 2 months. My LFT are not near normal yet but they are improving. I have PBC/AIH overlap though.

My hair is falling out. And like Stella, my husband is having to keep unclogging the drain. I have a long bob haircut and where I used to have to section it off to turn it under, I've lost so much hair I can do it all at once. 😕 It used to take forever. The hair above my temples is so thin, I'm afraid it will actually be bald spots there soon. I'll deal with it though

The bottom line is I'm grateful for the chance to save or lengthen my life. I've been looking at wigs just in case it gets that thin and since it is almost winter here, I'll rarely leave the house without a hat until spring.

I know stress can make your hair fall out and I've had a baby 4 months ago so maybe it is also related to that as well.

[SuziRae in reply to IAmTheGlue]

I have to mop up my hair every day. Coming pout in droves. I bought a basket made to sit in over the tub drain. I did this after my hair clogged. Now I just have to empty the basket after my shower. I was told it was my thyroid causing the hair loss so interested to see it's URSO as well. I have used the 'good' shampoos and they did nothing for me. Just another little twist I've learned to live with. I avoid wearing dark colours in public because my back will be coated with fallen hairs. lol

[gwillistexas in reply to SuziRae]

Has your thyroid been checked? I’m 63 & have thyroid issues since I was 14. Usually if my TSH gets off one direction or the other, I may notice a few hairs but not enough to worry.

[SuziRae in reply to gwillistexas]

Yes. Thyroid too. Autoimmune is such a picnic, eh?

[gwillistexas in reply to SuziRae]

Oh yea. But my thyroid wasn’t autoimmune. But last few years Dr can’t keep levels at normal range. My autoimmune may be messing with it now☹️😊

[happy0507 in reply to gwillistexas]

yes, have had my thyroid checked several times and each time it was normal

[gwillistexas in reply to SuziRae]

When I was on Urso, my hair came out much more than ever has with thyroid.

[kimphoebe]

I've been on uso now for 5 years and a non responder but only recently noticed hair coming out. I am also on a clinical trial so it could be the trial drug causing it.

[Ellewoods33]

My alp is 179. My Ast and alp are now normal thanks to ursodial. My hair was long, thick and curly. I wash it now only once a week but whenever I brush it, I literally have two brushes full of hair. I still have hAir but it is much thinner. My hair is growing but still coming out. At first, I cried and felt emotional. I just pray the medicine works and I can always get a wig if needed. I take biotin too. Hang in there! You are not alone. I have fibrosis stage 2.

[gwillistexas in reply to Ellewoods33]

My Alp was down to 179 last check. Think AST was only 5 points above normal. Alt normal. I too am fibrosis Stage 2😊

[Ellewoods33 in reply to gwillistexas]

I pray we stay there and don't progress or fibrosis gets better.

[gwillistexas in reply to Ellewoods33]

👍

[GrittyReads]

I cannot offer personal advice, but I wanted to check if the level of the urso dose you are taking, has been correctly determined by your Medic - according to your weight.

Having the 'highest dose available' should only be in relation to your body weight. Giving you more Urso doesn't mean it works any better - so get the dose checked.

Otherwise, if your dose is correct for your weight, then I'd take heart from the others here, and try some of their strategies - but check with your medic that taking stuff: eg biotin, is okay.

You might also want to talk to the advisors at the 'PBC Foundation' who host this site - see links at top of page to their website with info on email and phone contacts. The site has lots of useful info, so there may be stuff about hair loss, plus their advisors are really lovely and helpful to talk to, and if you join - it's free - you get more access to the website, member discussion, the magazine etc. They helped me a lot.

Hope this helps, take care.