Hair loss

Has anyone experienced hair loss? My daughters hair was full and down to the middle of her back in September, it is now between shoulder and chin length… cant seem to get any answers… checked to see if side effect from medication and it was not…

Katiejo,
I’m sorry your daughter is experiencing hair loss. Some patients who are taking Ursodiol do experience hair loss. It is listed as one of the common side effects of the medication. What is her current total daily dose? Have you discussed this with her hepatologist?

Mark
PSC 2011 / Liver Transplant 2015

She was on 5mls but bc of increased liver counts and her ggt up, we have slowly increased it to 9mls. She started losing hair in Sept/Oct and we didnt know her enzyme and ggt levels were up until the end of Nov… that is when the increase slowly started from 5 to 7 and now at 9mls. She has been on it for the last 7.5 years and the hair loss, according to the pharmacist wasnt one of the main side effects of ursidiol.

Katiejo,
In searching a number different medical web sites, most say Hair Loss is a common side effect while at least one I checked didn’t. But since you mentioned that the hair loss was noticeable when she upped her dosage of URSO it does sound suspicious. Here’s one site I checked WebMD. Click this link and then the Side effects tab once it loads. Hope this helps. https://www.webmd.com/drugs/2/drug-6665/ursodiol-oral/details

Mark

Yep, I lost my eye brows, beard and eye lashes albeit this was a couple of years before diagnosis. They had all grown back but Lost a little bit of eyebrow and eyelash over the last few months. Currently my ALP is about 250 - 270 which is up because it had been running at 160

I am sorry that she is gong through this. I experienced the same thing. I was taking Ursodil and when i cut my amount to 2 pills a day it stopped. Had my hair not been thick, I wouldn’t of had any left. I cut it all off to a really short pixie haircut and went through a 12 week scalp treatment at my hair salon. I waited a month and repeated it but found everything online and did it myself the second time. You can email me at ■■■■ if you want the info. But the product name is renea frutier scalp treatment. It’s a 2 step process and a shampoo

Yes it is weird tho, as the hair loss started before the increase in ursodiol tho. And then has continued since.i will look into and research that scalp treatment, as she does have rather sensitive skin :slight_smile:

Speaking as someone who is overly sensitive to medication, just because it’s not common side effect doesn’t mean it won’t happen to you.

Remember, meds accumulate in your system. You could have a side effect at any point – because not only do the meds accumulate, but you develop different tolerances, you can change (weight loss, weight gain, hormone levels and so on) and changes in other meds could impact this med.

You could try adding a prenatal vitamin to the mix, it does wonders for hair health.

azurelle