Give me a break !!!

[vicary]

I hate this God forsaken condition , can not recall what it's like not to itch !!!

[gwillistexas]

vicary...g’morning. I told my husband last night, I’m beginning to wonder if I really have PBC because itching seems to be a common thing with pbcers & I have no itch ever. Strange. 🤔

[Shulsey in reply to gwillistexas]

There are a few who do not experience the awful itch. I had it in the early stages of PBC. It doesn't seem to be a issue these days. Unless Im doing activity that causes me to sweat & the areas where something tight cuts into the skin. But it hasn't been anything like it was in the early stages. You must be one of the lucky😊

Stay strong❣️

Shannon

[SSMPCW123 in reply to Shulsey]

Shulsey, I am the one

with no bloodwork

pointing to PBC except

AMAs in the blood.

I am waiting to do

follow-up bloodwork.

I have of course read

everything on PBC.

So, when I have an itch

I get scared. The nurse

practitioner said that

my bilirubin was good

so the itching would

not be PBC. Is she

wrong?

[vicary in reply to SSMPCW123]

To be honest I'm not sure , my Bilirubin is 20 , some of us itch and some of us don't , for me personally it's not a normal itch it's like being stabbed with little needles all over with a bit of a sting right at my nerve ends . I also itch in my ears , eyes , mouth and nose but I would say overall my feet and hands and legs are the worse , I itch all night so don't sleep well and don't get much of a reprieve through the day now either. Sorry I'm not much help but hoping yr itch is not related to PBC .

[Shulsey in reply to SSMPCW123]

Im not sure either. My bilirubin is always elevated due to having Gilbert's Syndrome. I was just diagnosed with this

[SSMPCW123 in reply to Shulsey]

Thank you!

[GrittyReads in reply to SSMPCW123]

AMAs alone are not enough for a diagnosis of PBC, but what are your other liver function tests and blood readings?

I don't think the itching with PBC is just down to bilirubin. Plus, while bilirubin is an issue in some various liver-related conditions, the chemicals that are more relevant to indicate PBC are a specific bunch.

Talk to the PBC Foundation advisors - link at top of page for phone and email links.

[Ellewoods33 in reply to SSMPCW123]

My bilirubin was always good when I itched. My bilirubin has been good but I have PBC.

[vicary in reply to Shulsey]

So glad yr itch is no longer an issues , hope it remains that way . Take care .

[vicary in reply to gwillistexas]

Some never get the itch , I didn't itch for the first 5 yrs just this last yr , I am one of the unlucky ones my itching is severe and I don't respond to Urso , I recently had a fibro scan and my consultant is aiming at a liver transplant next yr I don't have a good quality of life anymore the itching and fatigue rule my days and I get very depressed , I can't tolerate many foods so now my appetite is poor, I try stay positive but it beats me more now than not . I hope yr one of the lucky ones and never get the itch it's unbearable at times .

[SSMPCW123 in reply to vicary]

I am sorry!

[Ellewoods33 in reply to vicary]

I hope you get your transplant soon. I care.

[Ellewoods33 in reply to gwillistexas]

I used to itch but thankfully I don't anymore. I do have PBC and as a result have fibrosis, stage 2. I take Ursodial 500 mg. 3 times a day.

[gwillistexas]

I’m sorry. So you’ve had PBC 5 yrs & now facing possible transplant? How long did you not respond to Urso?

[vicary in reply to gwillistexas]

Was diagnosed 5 yrs ago , but was misdiagnosed 2 yrs prior to that so 7 yrs really but when me and my consultant have talked about my past the signs are that I've probably had it for about 20 yrs that's how long I've had fatigue, urso kept me stable for about 4 yrs , but about a yr ago I stopped responding and my itch has intensified since , I am at stage 3-4 at mo my consultant doesn't want me to become critical hence him wanting me to have a liver transplant , this is the 3rd time he has asked me to have one I've declined previously but he says we are at the end of the road no more he can do to make me comfortable , my quality of life is pretty poor now the fatigue and itching rule it , the reason that the process towards my transplant won't begin till next yr is I'm on a course of meds for another ailment that last for 6 months and would affect the new liver , this course finishes in Dec then see my consultant early Jan to start the ball rolling .

[gwillistexas in reply to vicary]

I’m sorry. I’m still really scared of PBC. Doing all I can to keep it under control, but some days I think I can’t fight it. Other days I’m strong. I pray you will find relief & peace with what your dr decides to do. God bless you🙏🏻😊

[vicary in reply to gwillistexas]

Totally get that , some days I've no strength to fight these are the days I get really low and I'm finding the low points harder and harder to shake off , I am lucky in one respect my consultant is amazing and will see me anytime , I have alot to thank this man for he has picked me upfront my low points so many times I feel I have the best consultant in the world. It has taken a while to get my head around having a transplant it really does scare me but I cannot continue the way I am and one day it wouldn't be a choice . God bless you too yr in my thoughts take care .

[gwillistexas in reply to vicary]

You are blessed to have that close connection with your dr. Right now, the GI I’m seeing, acts like my concerns or questions are no big deal. I’m thinking I’ll soon be looking for new dr. My Internist highly recommended this GI but I think he’s not for me. Thank you & pls keep us posted. 🤗

[Biddyb]

I have started itching it's mainly at night and the evening maybe I don't notice it in the daytime if I am busy it's like the feeling you get when you have your hair cut and the cut hair goes in your clothes I try to ignore it but then it strikes somewhere else so I have to scratch only just started though I was diagnosed in 2008 just had bloods done which ALT was raised so hope if the reading drops the itching will lessen it has before so fingers crossed

[SuziRae]

Benadryl is your friend. Keep track of what you eat and drink as well as laundry soap etc. Purpose is to try to identify flare up. My life is soooo much better since I switched to organic fruit/veg/milk/eggs/chicken. I also stopped body wash which I suspect was irritating me. I hope you find relief.

[vicary in reply to SuziRae]

Unfortunately they don't work for me nothing does .

[SuziRae in reply to vicary]

I'm so sorry for you suffering. I know how bad that itch can be. Absolutely life-altering. I hope you find something that helps

[vicary in reply to SuziRae]

Thankyou for yr kind words , everybody on here are amazing people , it warms my heart . Bless you all x

[PBCRobert Partner]

Vicary,

i am sorry to hear about your itch. Would it be helpful if we spoke?

Robert

[vicary in reply to PBCRobert]

That would be good

[vicary in reply to PBCRobert]

Hi Robert , I'm in England , Bradford West Yorkshire .

[Pbcgirl28]

I'm so sorry. A lot of ua PBCers know all to well what you mean. I started itching when I was pregnant with my son in 2014 and didn't think much of it. It stopped after I had him. Then I had a major surgery last September which set everything off. Every since I've had the horrible itch I can only describe as a feeling like I've touch fiberglass. Some days are better than others. Some days I have no itch. I can go for a week without itch and think maybe its gone, then I have another bad episode where I itch so badly I break the skin. I have found that taking care of your skin is a MUST! Us only natural body washes and shampoos. I also use curel itch defense lotion every single day. I put it on all over body after my shower. This has helped. I also use a veterinary spray called Vetericyn Plus that I spray on me where ever I am itching. It helps a lot. Sometimes I have to spray it a few times. I let it dry then if. I'm still itching in about 10 mins I spray again. You can buy this at a vet or cal-ranch type store.

My AMA/GGT is always positive. My AST and ALT have been as high as 1,000. The URSO is definitely working for me though. My last test showed my AST normal and my ALT at 89, so not to bad at all. I'm also stage 1.

I wish you the best of luck, and know that you're not alone.