PBC, hair loss and itching

[kateadie]

Hi all,

my consultant is currently investigating me for PBC after 3 years of high LFT’s, 2 biopsies and no real answers! So I have started taking urso (500mg twice daily). But my itching has got significantly worse since starting it - is this normal?? I thought the medication would help ease the itching! And also since starting it I am noticing lots of hair loss. No bald patches or anything (yet!) but lots every time I wash it brush my hair and quite a bit on my pillow in the morning. Is this related?

I’m 33, 2 small kids and not a drinker or anything like that and feeling a bit lost and confused. Can anyone offer any ideas, insight or help??

Thank you in anticipation! X

[Mare-M]

Hi Kate,

You’re so young to be going through this. Sorry to hear.

My mum has cirrhosis (end stage)

Itchiness was her 1st syspyom. Sometimes it’s unvearable.

I’ve tried every cream, oatmeal based, natural, etc nothing really works for too long. Ice packs help sometimes.

You need to illuminate sugar from your diet as much as possible.

Drinking tomato juice (organic) doesn’t directly stop thebitchiness but it helps with bilirubin levels which can affect itchiness.

Good luck and take care

[kateadie in reply to Mare-M]

Brilliant thank you, I’ll definitely try tomato juice and cutting sugar

[Alison2306]

Hi,

I too am ‘youngish’ 34 and have 2 kids and have PBC.

Hair loss - stress and worry is a big one. When I first found out about my PBC 5 years ago I lost a lot. But now despite have already progressed to cirrhosis (seems I have a very aggressive quick progressing PBC) I have no hair loss. Our hair does grow in cycles and we all shed hair. I’d mention to your hair dresser to keep an eye on it. It’s so hard not to obsess about it (I know) but anxiety and worry are such big contributors.

The itch - I find it can come in waves. Sometimes nothing for weeks other times it will flare up....feet and toes 😭

I’ve found not being too warm helps pick up a can of boots own brand or some magicool spray - I find it works well and keep myself moisturised.

There are medications (I’m not on any) for the itching that your consultant could advise you on if you find it’s too much.

Foods can trigger for me - spice doesn’t help. I’ve changed my diet too I’m mainly vegetarian 🌱 diet now as less processing for my liver to do.

Also I had some vitamin testing done at the GP awaiting appointment with dietician to see if any additional vitamins as well as balanced diet can help with absorption of medication.

I’ve put myself on a google ban. Here anytime for you as it can be overwhelming. I’m very very lucky that almost all of the time I’m “normal”

Urso side effects maybe keep a diary or update on your phone diary of how you’re feeling daily and when you itch, things eaten, drank etc. Then that way you can discuss with your GP and or consultant.

I’m on 1500mg urso 🙄 and now obeticholic acid 5mg 🤞

Hope you are ok and remember everyone here knows or has an idea of how you are feeling xxx take care xx

[kateadie in reply to Alison2306]

Thank you so much. Nice to know I’m not the only one of a similar age.

Will definitely try a diary and see if I can spot any dietary triggers. Stress seems to exacerbate things definitely. My little boy (he’s 2) commented on my hair loss the other day which was hard. Just hoping it settles soon as it definitely is in waves.

Thanks so much for your lovely reply x

[Alison2306 in reply to kateadie]

Wishing you well and really hope the hair loss subsides. So difficult as our little people are in tune with us and can sense when we aren’t right and hard when they notice and you try to explain without detail. But lots of squeezy hugs and kisses to them helps 😍 my 6 year old says she’s mummy’s medicine. Xx

[GrittyReads]

Hi Kateadie,

So sorry you are going through this.

First thing: PBC, plus any cirrhosis of the liver that you may have, does not have anything to do with drinking alcohol. This is partly why all the consultants and support workers who deal with PBC (worldwide) waged a successful campaign a few years ago to 'formally/officially' change the name of PBC from primary biliary cirrhosis, to 'primary biliary cholangitis'. Further, diagnosis and treatment of PBC is now so successful, that hardly any one with PBC progresses to a cirrhotic state.

Cirrhosis just means 'scarring' and various liver conditions can cause scarring of the liver. Sadly, because alcoholism also causes scarring of the liver, the word 'cirrhosis' has come to be associated with drinking: which can be very hard on those people who have other conditions that scar the liver . I don't drink - partly because I know I'm at risk of PBC (I don't have it, but I could develop it), so I want to give my liver the best chance. However, in the past, before the name change, I've even talked to nurses who don't know what 'PBC' is ... and when I used the full (old)name, they assumed from the mention of cirrhosis that I drank! I think, on all occasions, that I just about stopped myself from being rude ...

I have to say ... your consultant should know all this, and should have put your mind at rest. If you have had liver biopsies that do not show any scarring of your liver, then - even if you do have PBC - you do not as yet have any 'cirrhosis'. High LFTs are one of the main diagnostic criterion for PBC; however, it does depend on the specific enzymes that are out of kilter, and you should have been tested for all other possible conditions - autoimmune and otherwise - that involve abnormal lfts.

However - 'formally / officially' - a diagnosis of PBC depends on 2 out of 3 'diagnostic criteria' being present. Abnormal LFTS typical of PBC, is one; the second most common test to confirm PBC is the presence of autoimmune antibodies typical of PBC, that is: AMA-M2. Usually, abnormal lfts, and the presence of AMA-M2 are enough for a diagnosis of PBC, and Urso would be given. In some people with PBC, AMAs-M2 are not present, and this is when a biopsy is usually done (or at least in the UK). If you have AMAs, and your lfts are typical of PBC, then I'm surprised that biopsies were even done, but as they were clear, you are probably only in the very early stages, and urso will help. If you don't have AMAs, then monitoring of your liver should continue - tho' again the absence of any cirrhosis is good.

If you have AMAs-M2, and are itching, and have other symptoms of PBC, then Urso is called for, and with some people it does seem to cause more itching, for a while. There is a separate site here on 'Health Unlocked' which is run by the 'PBC Foundation'. They are a UK support group that help people who have PBC. If you google 'PBC Foundation' you can find their website and their forum, here on 'Health Unlocked'.

They are so helpful and the website is full of useful info. You can contact their trained advisors via phone and email, and they are so supportive and knowledgeable. If you join the 'PBC F' (it's free) there is even more info on the member site. I would have a look at the site, read around and then have a talk to them.

I hope this helps. Above all, try not to worry: always the worst for any autoimmune condition. So, do all you can to relax, have fun and treat yourself. Sorry it's so long, get back to me if anything is not clear.

Take care, Gritty.

[kateadie in reply to GrittyReads]

Thanks so much for all that information. It definitely makes things clearer.

I don’t mean to be passing judgement or anything on people who do drink, it’s just a common assumption people make when they know I have liver problems. I am sorry if I have offended anybody.

I will look into the PBC foundation and talk to my consultant again.

Thank you

[Couch1]

Hi K, My itching* was greatly reduced by taking Alpha Lipoic Acid capsules every day (also take milk thistle, and a vitamin B complex.) Side note: I've cut back on my sodium to help with Ascites- it definitely helps. Maybe that is helping with my itch* as well.

[kateadie]

Brilliant help, thanks so much for replying. Are the acids capsules prescribed or something you have sources yourself?