Urso and hair loss

[Bellalou10]

Hi

Is there anyone out there that can tell me if they are taking urso and it is having NO effect on their hair? I'm reading stories about hair thinning and was hoping to hear if anyone's hair has not been affected?

[Karaliz]

Hi Bellalou

I have taken Urso for more than 12 years and have had zero side effects, including no effect on my hair.

Cheers from Downunder - Karaliz

[Bellalou10 in reply to Karaliz]

Thankyou for your reply karaliz, makes me a little more hopeful x

[Karaliz in reply to Bellalou10]

No worries at all. I was diagnosed at 38 when the youngest of my 4 children was 5 so have had a long time to come to grips with things ! Every person's journey on the PBC road is different Bellalou and you will find your own groove on that road. I wish you all the very best.

[Karaliz]

Meant to add I have been on the trial drug Obeticholic Acid for 2 years in conjunction with Urso and have had no side effects from it either.

Karaliz

[Hidden]

Hello Bellalou10.

I've had no changes as regards to my hair since starting urso almost 5yrs ago.

My explanation to thinning hair in a female would be hormones or even hair styling products and heat appliances can cause thinning hair as we age.

I've only ever used a hair colourant from time to time and didn't start until I was in my late 30s. (I am now 51.) I've never had a hair perm, rarely use a hairdryer not any hot tongs, etc either.

[Bellalou10 in reply to Hidden]

My hair is not like it used to be either and I agree it's down to age, dying it over the years and heated appliances, I so hope the same goes for me with the urso, I can cope with a bit of weight gain but not my hair please🙏 Call me vain!

[Ohio82 in reply to Hidden]

Hair color is out for me now because of the chemicals. Hair has a lot to do with age. Heredity etc. my hair issues are PBC not Urso. That's my opinion & everyone is different

[Hidden in reply to Ohio82]

Hello Ohio82.

I have been buying probably a slightly more expensive hair colour from time-to-time and ones without certain nasties.

I have never worn make-up or done my nails, etc so for me the only thing I do have is using the odd hair colour.

I have sometimes thought I'd just leave my hair to be its natural colour but then I get so far and think why not live a litte.

[Shiloh119]

I started on Urso 10months ago and have had no side effects and my hair is fine but I remember reading that it could cause hair loss when I was first diagnosed and was also worried about it. From reading other posts I think you would be quite unlucky to lose hair. Xx

[Bellalou10 in reply to Shiloh119]

Hi Shiloh119

That is good to hear, hope I am that lucky Thankyou x

[SimbaTutor]

Bellalou 10, I am not losing my hair, but the texture is changing after 18 months on urso and I have lost much of the natural curl I have always had. I don't color my hair and only use a hair dryer with a diffuser for a few minutes. Between the natural curl and a good haircut, that routine has been sufficient to keep me looking professional. I guess I will have to learn a different routine for hair care since the urso is here to stay.

[Bellalou10 in reply to SimbaTutor]

That's good to hear you are not losing it, I can cope with it going straighter

[Bellalou10 in reply to SimbaTutor]

Are you feeling well on urso otherwise?

[SimbaTutor in reply to Bellalou10]

I had an adjustment time of a couple of weeks; however, I had just been put on blood pressure meds at the same time so it is hard to say how much was urso and how much was bp med adjustment. In addition, my gastro doc pulled me off all hormones (10+ years of them following surgery) in addition to all O-T-C painkillers (NSAIDs and tylenol) so I was in a serious adjustment phase physically.

I made multiple changes in a short amount of time. In addition to the stress of the diagnosis, I was dealing with daily nausea and tremendous fatigue and was questioning whether I could even continue teaching when school started again in the fall. Since I am self-employed, that was really scary, so I had lots of motivation to find some answers quickly.

I changed all my soaps, shampoo, etc. to all natural products to ease the processing load on the liver. I started with goats milk soap and Burts Bees shampoo/conditioner. Currently, I am using Super Sensitive Shampoo and Body Wash by California Baby that I find in the baby dept. I shifted my diet to much less processed foods and increased natural fruits and vegetables as well as complex carbohydrates. I also increased the amount of water I drank each day. In short, I started taking care of myself and making better choices.

I know the information and idea of changes may be very stressful right now because I could not fathom shifting gears at that level 18 months ago. However, I feel better now than in years and I am still learning to make choices that are good for me and not just for the benefit of others (a very difficult shift for me since I have been VERY good at taking care of everyone else and not myself for years). Please continue to ask questions. The people here are wonderful and all of us have been where you are now and understand the scariness of this diagnosis.

[Ohio82 in reply to SimbaTutor]

Lot of the same changes u have made

[YummyBear in reply to SimbaTutor]

Very information article. Please could you say what you mean by 'as well as very complex carbohydrates'? Is the latter a good thing and if so, what types of these carbo's would you eat?

[YummyBear in reply to YummyBear]

Whoops, meant to say...... very informative.........

[SimbaTutor in reply to YummyBear]

I have a complex carbohydrates list labeled "preferred" and simple carbohydrates list labeled "keep these to a minimum" as an aid for my husband who does the grocery shopping. Complex carbs include grains like oatmeal, wild rice, multi-grain bread, museli, pinto, navy, kidney beans, lentils...vegetables include spinach, turnip greens, okra, asparagus, celery, split peas, carrots, cucumbers, onions ...fruit includes apples, pears, oranges, strawberries, plums, etc. Simple carbs include sugar, fruit juice, pasta or bread made with white flour, honey, jam, yogurt, chocolate, etc. and I try to limit these whenever possible.

Complex carbs require more processing by the body to create energy versus simple carbs that take much less time to process and can contribute to rapid ups and downs in the blood sugar that may create temporary energy on the upside but compounds the fatigue when it drops after the sugar rush. Eating the complex carbs helps even out the swings and aids in maintaining a fairly constant energy pattern that is better for me in my schedule.

[YummyBear in reply to SimbaTutor]

Thank you so much for info

[Rockie]

Not affecting my hair

[Rockie]

Not affecting my hair

[teddybear7]

I have lost other bodily hair ie part of my eyebrows & thinking in other areas but head hair as thick as it always had been. But it all started before urso not because of it. My consultant says PBC itself can do it.

[CathieG]

I posted the same question months ago because my hair is thinner. Interesting thing is that on the American packaging, side effects include hair loss! I thought I was the only one but as someone else has already said, we are all different and will all have different experiences.

[Gioielli5]

My hair is as thick as ever!

[Junolee in reply to Gioielli5]

Me too. But if thinning is anticipated with age but so far so good x

[Wingding]

I've noticed no difference to the hair on my head but have lost my eyebrows and no,longer need to wax my under am or leg hair as that too has disappeared!

[Bellalou10 in reply to Wingding]

I don't mind never having to shave again! Hope you are feeling well x

[jrobertson1]

I have one patch of thinning hair at the front in my fringe. My hairdresser noticed it and says it is common in menopausal women. Think it is down to hormones as I am menopausal.

[dollydaydreams]

I started to loose my hair, I don't know if it was because of the urso or PBC but have started to take Biotin and vit B complex and it is starting to thicken up again, I also use biotin shampoo and conditioner, I Don't have any underarm hair or leg hair and either, I noticed in my medical records it is down as autoimmune hair loss ( Alopecia Areata )

[Twinkle26 in reply to dollydaydreams]

I was diagnosed as having diffuse alopecia areata years ago they said due to stress, then years later menopause in late 30s, due to having hysterectomy I've been on HRT patches since then AND UNDERACTIVE THYROID, itching mainly my head and sides of arms, my eyes feel weird and dry a lot of the time, and stomach pains. There's a lot of connections to these illnesses and no one connecting the dots.

[dollydaydreams in reply to Twinkle26]

You are right there Twinkle no one does connect the dots, I was on HRT patches after a full hysterectomy 24 years ago and had lovely hair as soon as i came off it at the same time as diagnosis i ended up with severe established osteoporosis and my hair started to fall out, I am now back on my HRT patches after demanding them from my GP as i flatly refuse to take alendronic acid.

[Twinkle26 in reply to dollydaydreams]

I've had hip problems and was given the steroid injection into my hip and physio but it's coming back again, I'm still waiting to see hepatologist appt in Feb. positive AMA but not given any info as yes all info has been from pbc foundation and found very helpful.

[Junolee]

No effects at all. My hair is still quite thick and I find much easier now to maintain my ideal weight since starting urso but not sure if that is just better diet and no wine haha!

[Junolee in reply to Junolee]

I am 3.5 years diagnosed and on urso.

[Tracy181]

I think that it did have an effect on my hair...however, it was very short lived. Once my body hot used to it, the effects wereally over. A lot of people handled the med quite well, my body needed to adjust. I am happy to report that after my initial year, everything is back to normal.

[carpman32]

Hi I've been taking urso for the last 7 years and if anything my hair seems to grow quicker, I'm a 71 year old man and have to get a hair cut every four weeks, so please don't worry, hope this helps & keep well

[Bellalou10 in reply to carpman32]

That's great! Hope it has the same effect on me, thankyou

[crundalite]

Hi bellalou 10

I have been on Urso for 20+ years. My hair has always been thick but fine. It is no different now, at 70, than it was before so I guess the answer is no hair loss in my case. Some annual 'shedding' does occur around December but

[Jowen]

Hi, I have now been on urso for two years and I am sorry to have to say I have experienced recurrent bouts of hair loss. Not sure what is down to what though, hopefully you'll be fine. Urso has changed things for the better for me and I don't suffer from any other side effects. But I feel like I have aged 10 years since I was diagnosed and I wish I had more energy to deal with things more swiftly and energetically. Perhaps I should start taking vit B for instance...

[cazz22]

Hi no difference in hair thickness-I'm 56 I have my hair highlighted about 4 x a year.however my eyebrows are sparser and only need to leg shave about 2x a year

[Bellalou10 in reply to cazz22]

That's good to hear, my eyebrows are sparser and I haven't even started on urso yet so I think age/hormones etc also have an effect. I'd quite like not shaving as often 👍🏻

[gardner646]

Hi, I'm new to the forum and have found the discussion about hair thinning very interesting. I've been worried and distressed about my hair loss for some time. I'm 73 yrs old and was diagnosed with PBC 12 years ago. About 18 months ago, it was confirmed that I have another auto-immune condition called Frontal Fibrosing Alopecia. Prior to this I'd been seen by one of the Gatro team for my review appt and mentioned that I had developed a couple of bald patches at the hairline and enquired if this could be a side effect of the Urso. My concern was passed to the Gastro Consultant who then gave me the option of not continuing on the medication. I must add that I'm fortunate in that my PBC hasn't progressed much, apart from the fatigue which is much worse. I haven't taken any medication for PBC since then and liver function tests have been fine. Unfortunately the Alopecia has progressed and my hairline has receded by at least 5-7 cms. more so at the front and sides than the back - it's now quite draughty around my ears in this cold weather! The prescribed medication is Hydroxychloriquine Sulphate. I told the Dermatology Consultant at review last month that the tablets don't seem to be slowing down the hair loss in my case - he replied (quite insensitively, I thought) well you can come off them! Maybe I'm being cynical but as I'm over 70, perhaps he thought I shouldn't be quite so worried by it. I'll continue on them if I can - just in case! Having read the replies, I'm inclined to agree that the Urdox is not to blame - it's just bad luck that my immune system has taken exception to some of my hair follicles. One other thing - I still have eyelashes but no eyebrows - they were the first to go and last year I had them tattooed on - a bit expensive but worth every penny as it's made a huge difference to my confidence, I love them to bits. Best of luck to you all and keep positive.

[Twinkle26 in reply to gardner646]

Hiya and happy new year, I was told I had mal pattern baldness when I was in my 20s, I used to have long thick wavy hair, after being used in studies over my hair loss I'm told I have diffuse aloepecia areata, I'm currently trying Glucoma eye drops onto my scalp I feel short wispy hairs growing. ( apparently a side effect of Glucoma eye drops is their eyelashes grow very long).

Hope this helps.

[dollydaydreams in reply to Twinkle26]

Oh thats good to know Twinkle, can you buy them over the counter

[Twinkle26 in reply to dollydaydreams]

No they are prescription only.

[dollydaydreams in reply to gardner646]

Get some Biotin as it has stopped my hair loss and some has even grown back, i take 1000mgs a day and also take vitamin C complex. My Gp is okay with this. I have also just bleached my hair and none fell out, was fed up of looking like a frump.

[gardner646 in reply to dollydaydreams]

Thank you so much for your advice about Biotin - the hospital hasn't helped me and even took me off the medication because it hasn't helped! I felt that the Consultant was unsympathetic and unfeeling. I sent for 6 months supply of Biotin. I've already noticed a marked improvement in my nails after 3 weeks. Frontal Fibrosing Alopecia hair loss is thought to be irreversible but I'm hoping that at least the Biotin will help my hair to become less fragile. Anyway, it meant a lot to me that you took the time to reply. 😘

[dollydaydreams in reply to gardner646]

Hi gardner, i have been using it now for 6 months plus, I normally buy it when it's on buy one and get one for £1 deal, I have now been able to cut a fringe back into my hair and have just coloured it ( blonde ) I am beginning to look like my old self again round the head, and yes i could use my nails as screw drivers at the moment :o).

My consultant is the same he does not seem in the least bit interested and i am going to ask to be referred to another one soon.