Advice for someone just diagnosed with PBC- stage 3

[jennymcdonough]

Hello, I'm actually writing for my sister who was just diagnosed last month with PBC. She is 42 and in stage 3. I am wondering if anyone has any advice for her? specifically, we are looking for any ideas on how to get at least a little relief from her incessant itching? Thank you so much. Any info is greatly appreciated.

[Ballymahon2]

I have noticed others on this site have said urso helps with the itching i am shocked that some people are diagnosed stage 3 you just wonder how doctors could allow this to happen

Your sister has already got symptoms

Why was she not diagnosed sooner

I have started on ursofalk stage 1

I dont have symptoms but i believe once your sister starts on medication for pbc the itching improves

Hope all goes well for her

[mjk98 in reply to Ballymahon2]

It can happen if u don't go to doctors like me ...i take Benadryl hen it gets bad

[Ballymahon2 in reply to mjk98]

That explains it i was diagnosed from routine blood tests i got a shock because i was feeling well no symptoms i think i was in denial about diagnosis for a while

[4pjx__ in reply to mjk98]

I don't or didn't go to doctors either. Diagnosed stage 3. I wasn't sick or anything but started having tummy pains form a hiatal hernia. That's when they discovered high lft's. I don't have the itch so far. I do get fatigued but I am 63.

Pam

[YvonneGS in reply to Ballymahon2]

My husband was finally diagnosed at Stage 3/4 with fibrosis even with regular doc visits for Type II diabetes and complaining of chronic fatigue. It is still a rare disease and many docs don’t know what to look for, so it gets missed, unfortunately. Our new family GP realized something was wrong with his liver enzymes and sent him to a specialist who thought we were lying when we told him that my hubby doesn’t drink! After 6 months we asked Our GP for a different specialist, and this one knew what it was and confirmed it with a biopsy. He was put on Urso right away and it has helped bring his numbers down. Frustrating, because it is likely he has had it for years, but his gallbladder removal probably kicked up the activity and exacerbated his symptoms greatly. Just glad it has been caught now though...

[Ballymahon2 in reply to YvonneGS]

Hope your husband is doing well i am annoyed at my gp because my lfts were elevated since 2013 and i have only recently been diagnosed i agree with you that doctors are not very familiar with pbc and therefore dont refer patients early enough for a diagnosis

[LorraineLouise in reply to Ballymahon2]

I went to doctor regularly. In fact two different Drs. This disease is so rare that most Drs have had no experience with it. So it does get missed often times.

[Ballymahon2 in reply to LorraineLouise]

I went to primary doctor regularly for blood tests my lfts were elevated but did nothing about them he did ama test in sept last year

[Ktltel]

Hello,

So sorry to hear about your sister. Some have tried Cholestyramine to help with the itching. Talk to her doctor about it. Hope this helps.

Stella ❤

[butterflyEi]

Hi jennymcdonough

Sorry to read that your sister suffers with the so called itch of PBC. A lot of people find that once they have taken Ursodeoxycholic Acid for a short while the itching eases and I would wish that for her. I itched prior to diagnosis and once on URSO was symptom free for about 10 years until a stressful family event set the "itch" off again. I have since tried anti histamines which worked for a while (cetirizine two tablets twice a day) when that stopped working for me I was prescribed cholestyramine powder 2 sachets one before and one directly after breakfast, this takes a while to get into the system but after about 2 months I was also prescribed Rifampicin which made a huge difference but later also added sertraline to the mix. This medication is all prescribed by the specialist. Also I use a 2 per cent menthol cream straight from the fridge which seems to somehow confuse the skin and gives temporary relief.

It is helpful to keep her skin soft and supple so after shower/bath a cream such as E45 may be useful for her. I find a shower can make me more itchy so I wait until I cool down (never have a hot shower) before applying my body cream.

If you are a member of the PBC Foundation, free to join, there is a good article on itching in the Bear Facts Magazine, I think is was Spring 2015 but if you cannot find it get back to me and I will confirm which edition.

best wishes to your sister and good for you for being so supportive

[jennymcdonough in reply to butterflyEi]

Thank you so much---this is very helpful. any advice is greatly appreciated and I will certainly pass this info along to her. Thanks for taking the time to give me so much info--- we are trying to learn everything we can!

[jjones78]

Hi jennymcdonough

I was also diagnosed last month but I am waiting on a fibroscan to determine staging. I am 39 and I am really suffering with the itching, I am sitting here itching away! I actually found that the itching got worse once I started on Urso and my consultant told me that this is common. I think it can take a while for the Urso to have an effect but we need to keep taking it as hopefully it will delay damage long term.

I have been taking cholestyramine powder 2 sachets for about 3 weeks now with no improvement yet but I think as butterflyEi says this can take a while to get into the system. My consultant has assured me that there are lots of treatments that we can try for the itching so I guess it is just trail and error, but it gives me hope that I will get some relief eventually!

I am also using lots of moisturisers on my body, which I never did before. I find that trying to keep busy and distracting myself helps as it is more difficult to itch when you have your hands full and you are surrounded by people!

Your sister is very lucky to have your support.

[RoxyP]

Hi Jenny. I was diagnosed earlier this year and put on Urso straight away. Initially the itching got worse. But I am now 8 months in and the itching has improved substantially. I only get a bit at night to times now which is more of an inconvenience than a problem. I found that keeping moisturised helps a lot. Your a gem for being so supportive. Regards. Roxy

[jennymcdonough]

Thank you to everyone, we really appreciate all of your info/ideas/suggestions. Thanks for taking the time out of your day to get back to us. We are trying to gather as much as info as we can. Has anyone made changes to their diet and found that to be helpful? She is eating very healthy and her cholesterol has dropped, so I am wondering have any of you researched more about what foods are best to eat/avoid (other than fatty/processed foods)? And has anyone tried a liver cleanse?

[Hidden in reply to jennymcdonough]

My hepatologist just said to maintain a healthy lifestyle, exactly what your sister is already doing. Avoid having too much red meat. Eat more fish. Personally I don't believe the hype of cleanses if you are already eating clean.

Your sister is lucky to have you for support!

[sylviaj in reply to jennymcdonough]

Hiya , just reading through thread so just to say with regard to diet, I was diagnosed mid 2017 after seeing go with severe fatigue, I put myself on vitamin D, multivitamins and omega 3 fish oils, plus went vegetarian. My fatigue has been so much better. I think the vit D was the key for me, if I don’t take it for a couple of days I really notice. Worth a try.