Hello all! My hair started thinning about a year ago but much worse the first of the year. I started on minioxidil topical and antigen lowering shampoos. My hair started growing and doing well
I started on urso a few weeks ago and the hair is coming out again. Does this ever stop or does it go in stages. Growth and loss?
Apparently once the hair falls out it does not grow back as in my experience!!! My dermatologist has tried many remedies but to no avail
I have lost hair as in eye brows & things but not on my head yet.x
Is hair loss associated with PBC? If so, I was not aware.
I do know that hair loss is typical of several conditions, as well as due to specific shortages, and I think it would be worth checking for as many of those as possible.
I believe there is hair loss with thyroid conditions (hypo?) especially thinning eyebrows, first; so that's a good one to check as hypothyroidism and the autoimmune Hashimotos thyroid condition often appear in PBC sufferers.
Also, my friend lost hair rapidly, and it was put down to low iron, and her hair came back perfectly once her iron intake was massively improved. NB she was later found to be coeliac (gluten damages the microscopic villi of the small intestine, so that they die back and gradually fewer nutrients are absorbed, and people become ill: in the past would possibly have died. It is a serious condition, NOT a 'fashion-illness', as recently portrayed in a national newspaper) so it's possible that other nutrient shortages played a part in her hair loos, although there was a visible improvement well before coeliac diagnosed.
I was also ill about 18 months ago with first a coughing bug (lasted for weeks) and I had the norovirus on top of that - spent Xmas 2012 over a bucket!! I didn't eat for 3 days, hardly ate for another week, and with the coughing continuing, I had a very limited diet for another week or so, as everything tasted disgusting, or set me coughing. Late into this phase I noticed my hair coming out in handfuls, and it eventually got pretty thin and awful. But once I really upped my diet, things got much better, and it's now better than for years.
So, check other things!! Good luck.
I suffered badly from hair loss 18months ago and low iron turned out to be the cause. Obviously there are many things that can cause hair loss but it might be worth getting checked.
Hello NotorDJP.
Well I am now 50 and started going through the change early 2013. I've always had thin hair and over the years though I have seemed to lose a lot when brushing or washing my hair (pull it out of the plug trap) it's said that it's not much and a natural loss. I notice my hair (shoulder length) that I have hair that is short sprouting out of the top of my head that has obviously been lost months prior and that is how I origianlly interpreted hair that is lost and why it's not appeared to be any thinner.
As we age though it is apparently said that our hair thins naturally anyway. I think it is down to genes regarding whether one has thick hair or fine hair. I find the best way to give the appearance of a thicker and more healthily hair is to have the ends trimmed at intervals.
I definitely do not think that urso has anything to do with hair loss. If urso was an hormone as opposed to a component of bile then I would probably think otherwise.
Yes I have been going through the hair loss. I take Biotin (over the Counter, Vitim A from a plant based diet (carrots). I do not know what will happen with my hair. I purchased organic shampoos and conditioners, still falls out.
Well I had a life threatening incident and recovering from my 8 day hospital stay. I am glad today for whatever hair I have or do not have. I was a very vane person when came to my hair not anymore. I am going to cherish every day. There are wigs I am thinking for myself. This is the place I am in right now in my head.
Love you all.
Male pattern baldness I would suspect! As my hair is not affected I still go and have my hair thinned when I get it cut and it grows like a weed! If you where female I would say have thyroid checked as that is a sign of a malfunction in the thyroid and you might still want to do that. Protein digestion issues are common with PBC but that is usually in the skin production and not hair, but I could be wrong as everyone's has their own issues.
I am female not male
You can have that hormone driven syndrome be male or female it kind of like PBC not really named right some call it female patten baldness but it is not the correct term, sorry if you think I implied but it's a general term.
Im not bothered but you clearly said "if you were female". Implying i was male. Again no biggie
Also female pattern baldness is used freely in the us. I have researched this quite extensively prior to pbc
I would be more concerned about the minoxidil and it's effects on your liver! What is disconcerting is that women are using it and has not been FDA approved but some doctor are giving only 2% as a ginny pig type with not real facts behind it on women that is why I made that statement along with your photo being male and men do get PBC I was just generalizing no idea on gender! Do more research as any topical a can be absorbed into you liver and compromise you system!
I've been to a dermatologist and he told me I have female pattern baldness but I'm not sure he was correct. He did blood tests but this was before I knew I had PBC. My hair isn't falling out in clumps or anything, it just is coming out more in the shower again and before I had same as stopped it. I know we all go through sheds at different times, so hopefully this is just one of those. I just hate to lose what I have regrown. I take biotin and vitamin E and D as well as use a cocktail of minoxidil 5% with other good things. I still have an ok head of hair, but I have never had thick hair anyway. I have had baby fine hair but lots of it. I will watch my progress and go back to a derm if I need to. not the last one, didn't like him at all.
I lost handfuls of hair last summer and saved it in bags to share with my Gastroenterologist, Rheumatologist and Dematologist ---- I got three answers and then some! My gastro felt I was stressing due to the recent DX of PBC and experiencing some family issues, and recommended taking over-the-counter Biotin. The Rheumy coined it as menopause, hormonal changes and autoimmune disease, and my dermatologist suggested I see a Gastro because my face (rosacea) was also flaring and she assumed there was something transpiring in my gut causing malabsorption. I supposed in a sense, all three were correct. The stress has since calmed, I am going through menopause and I've learned all my vitamin levels are low in spite of a healthy diet and taking supplements. The good news is that some hair is coming in (and sticking up all over!) and I've learned how to 'tease' and make it look thicker than it is. : )
I have gotten a second opinion in my treatment for perhaps "pre-PBC." I am not on "the pill" yet. I did fear one of the side effects of URSO ~ hair loss~ I see you knew that. Hmmm, I wish I knew. I will start some researching.
Francine
KNOW YOU DON'T NEED TO READ THE WHOLE ARTICLE.
PLEASE NOTE: SIDE EFFECTS.
Medical Editor: John P. Cunha, DO, FACOEP
Prescribing Information
Drug Description
Indications & Dosage
Side Effects & Drug Interactions
Warnings & Precautions
Overdosage & Contraindications
Clinical Pharmacology
Medication Guide
For Patients
Urso Overview
Urso in Detail with Side Effects
Urso (ursodiol) is used to treat small gallstones in people who cannot have gallbladder surgery, and to prevent gallstones in overweight patients undergoing rapid weight loss. Urso is also used to treat primary biliary cirrhosis (PBC). It is a bile acid. This medication is available in generic form.
Common side effects include stomach upset, nausea, diarrhea, dizziness, back pain, hair loss, or cough.
The recommended adult dosage for Urso in the treatment of PBC is 13-15 mg/kg/day administered in two to four divided doses with food. Dosing regimen should be adjusted according to each patient's need at the discretion of the physician. Urso may interact with cholestyramine, colestipol, estrogens (birth control pills or hormone replacement), or antacids that contain aluminum (such as Rolaids, Mylanta, or Maalox). Tell your doctor all medications you are taking. During pregnancy, Urso should be used only when prescribed. It is not known whether this drug passes into breast milk. Consult your doctor before breast-feeding.
Our Urso (ursodiol) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
Sidenote to my post above: I am NOT on Urso, and my hair loss seems to be from a variety of factors, outside of the medication.
hi Notor, I have read many times that itching and hair loss are a result of PBC. They can also be side effects of the urso. See francineadriene's reply to your post. I have both symptoms. I had the itching before I was diagnosed and put on urso. I do think the urso has made it worse. My hair did not start thining until I started the urso. It is now noticeable. If my numbers have not improved when I take my next set of blood test I will stop the urso. The added side effects of the drug are affecting my quality of life.
I actually had too high of an iron count - hemochromatosis- and have had 2 phlebotomy treatments to lower it. So my hair loss can't be contributed to a low iron count...
Hair Loss
Hair Loss
Pbc hair loss and backpain
Hair Loss with Urso
PBC and Hair loss
