Be positive

[wakeboarding]

I am 65 male just been diagnosed with pbc my liver results have been high for 10 years but when I went to doctors they asked a couple of questions and that was that. Retired 2 years ago feeling tired thought somethings not right joints aching etc. Went back young doctor said I will get to bottom of this and she did with help from liver specialist. A relief knowing that they found the problem Could of been worse now on Urso and antihistamine for itchy legs been on Urso for 3 weeks fingers crossed no noticed any side effects yet.

[Hidden]

Hi

How are you feeling tonight? It's a good job you saw that young Dr. Take care Lynne

[Ballymahon2]

Hope you respond to urso so glad you got diagnosed at last

[Candy12]

Welcome to the group no one really wanted to be in, but now we are, you’ll find a friendly bunch. Drop in with your questions or just for a chat, whenever you feel the need.

Check out the PBC Foundation web page if you’ve not done so already they have lots of up-to date information for us with PBC, it’s free to join and they produce a magazine that can be emailed to you, which you may find interesting.

[Hidden]

Hi Wakeboarding

Can I ask, you mentioned after 10 years you've finally been diagnosed ! We're you being monitored over those previous 10 years ? I'm only asking as I'm yet to be diagnosed after almost 2 years of monthly dodgy blood tests scan and etc!

There's an issue with my autoimmune system but what's causing my symphoms are unknown at present

My fingers are crossed for you that the urso works well for you and life improves!

Love

Shropshirelass

[butterflyEi in reply to Hidden]

Hi Hidden , may I ask if you are under the care of a hepatologist or is the GP taking your blood tests? As I am sure you know elevated anti-mitochondrial antibodies (AMAs), alkaline phosphatase (ALP) and the general full blood count would hopefully avoid the need for a biopsy and give the specialist a good idea of PBC. I know there are many other liver diseases some of them quite rare, I hope they find an answer for you soon.

best wishes

[Hidden in reply to butterflyEi]

Hi

My AMA has only been raised once about 2 years ago when my hepatologiest throught I had early stages of PBC but it now looks like that's not the case. ALT and GGT's have been abnormal for years, my consultant is now waiting for my LFT bloods to raise sufficiently enough to warrant a liver biopsy but I have no idea when thats going to be!

I currently have 4 emergency blood test forms to use as soon as I feel unwell to warrant using one.

I'm to call my consultants pa notifying her when I'm unwell again to enable her to check blood tests.

It's going to be a long road I think ....

[butterflyEi in reply to Hidden]

I am sorry to read of your uncertainty I hope they can find answers for you

[mrspeffer2 in reply to Hidden]

Good morning. Sounds like, from your other posts, that you are very active. I was reading about high ALT/GGT levels and exercise prior to testing came up. As far as the AMA's, I happen to be one of those the medical world has labeled as AMA negative PBC. IT's odd as my LFT's are always high, but no symptoms, fibroscan good, allergic to URSO. Hope you are able to get to an answer....as said before, uncertainty is nerve wracking. Be well

[wakeboarding in reply to Hidden]

Wasn’t been monitored at all I used to pay once a year for a sovereign health check they kept saying keep your eye on liver results. Then I went to doctors with tiredness etc then young doctor got me diagnosed

[butterflyEi]

Welcome to the group wakeboarding

You sound pretty positive in your post and its good to read that you found a doctor who looked beyond your being a male to find PBC. Apparently the ratio for men to women with PBC is something like 9:1 which with a rare/uncommon auto immune disease makes you really quite rare. Hopefully once the URSO has started to work its magic you will feel better. You may find using a 2% menthol cream on your legs will also help with the itchy feeling - it is called Dermacool. Some also recommend Aveeno amongst other products. Keeping the skin supple helps stop the finger nails from breaking through and causing other products. I am an itcher and have a cock tail of meds to help resolve my issues so there is more that the doctors can do to help if the antihistamine does not work for you. Fatigue is an issue with PBC, unfortunately as yet there is no real medication to help with this however it is worth having your thyroid, vitamin D and vitamin B12 checked as this can sometimes be a contributing factor to fatigue.

We are a nice bunch of people in the group, some with many years of PBC personal experiences so if you have any questions please do ask away. You may like to join the PBC Foundation (free to subscribe) as their website is full of useful accurate information, particularly worth a read are the EASL guidelines on PBC.

best wishes, do let us know how you get on

[wakeboarding in reply to butterflyEi]

Thanks that’s really helpful

[Stub007]

Stick with it, and good luck!

[YvonneGS]

Welcome to the group. Everyone here is terrific. My husband is in a similar situation to you. He was finally diagnosed in 2015 at the age of 58 but the specialist who finally sorted it out believes he had it for at least 10 years prior to that. He was forced to go on disability in 2017 as the fatigue and brain fog got to the point where he could no longer work. He is staying pretty stable at Stage 4 with the Urso, thankfully, and does not have major problems with the itching. For that we are grateful. Try to pace yourself each day. I hope you have a good support system in place, so you can enjoy each day to the fullest. That is what we do! Leading a very simple life still provides us with many blessings. While physical symptoms are similar for men and women, I believe this disease has different psychological effects for each sex. It is something different for men to cope with, and most of the support is geared to women due to their dramatically higher incidence of the disease. Nonetheless, help is out there and you are among supportive friends. Take care!

[Philippastcarin]

Welcome to the world of PBC

Also male , diagnosed around 13 years ago.

[Ballymahon2]

I love the profile picture

[wakeboarding in reply to Ballymahon2]

Thanks my son played Marius in it

[boneytoys]

From nz I’d like to just say welcome and that the info here is always heartfelt and genuine. It’s a caring group and if you have any questions/ concerns speak up. . You will get all the support And information you need

If you don’t know someone here will and if we don’t know pbc foundation will assist

Take care you in for the long run here mate !!