Newly diagnosed I have many questions. - PBC Foundation

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Newly diagnosed I have many questions.

Jess5377 profile image
21 Replies

Hello I am new to this forum. I have recently had a liver biopsy and have received the pathology report saying I have chronic hepatitis with features of primary billary cholangitis stage 2. The fatigue is bad, my legs from the knees down always hurt. I know my vitamin D is low so taking that supplement. I have also recently had an adrenal function test where my cortisol levels were normal but I had low acth levels. Has anyone else had this? I'm waiting for my follow up appointment to see what my next steps are medication ? I'm not sure if my Gastrointestinologist will co tinue to see me or if he will send me to a liver specialist. There's so much to learn. How many of you still work a "regular" full time job, how many have since had to file for disability? I have so many questions.

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Jess5377
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21 Replies
claygi profile image
claygi

I have PBC stage 2-3 fibrosis as diagnosed by a MRE, not biopsy. I have CREST Syndrome and RA too, along with a couple other auto immune malfunctions. My joints always hurt and I’m fatigued always. My worse issue is the constant pain in my liver. I only work 2 days a week now. Overall though, I can’t say I’m that “sick”. I know that sounds strange, but I look totally normal and for the most part, I’m ok. It’s all relative!

Jess5377 profile image
Jess5377 in reply to claygi

I currently work full time in a busy operating department cleaning the rooms after surgeries. It's very fast pace and I am finding it harder and harder to keep up (I'm 38). I need to work full time for the insurance but the fatigue is terrible, some days it's all I can do to drag myself out of bed and to work. I just had my biopsy in November so I'm still new to all of this. I am working with the H.R department to see if I can find anything not as fast pace but still within the hospital. Have you had any fluid build up in your abdomen or anything yet or does that come later?

claygi profile image
claygi in reply to Jess5377

None of that fluid build up aka ascites. I think that comes with later stage cirrhosis.

gwillistexas profile image
gwillistexas

Hello & welcome. I am supposedly stage 3 fibrosis. I have no symptoms & work full time.

Karaliz profile image
Karaliz

Hi and welcome Jess

I was diagnosed 15 years ago when I was 38 - stage 1-2.

I progressed to cirrhosis/stage 4 about 6 years ago. I have several symptoms but the constant fatigue have proved by far the biggest challenge to deal with. Having said that I work 3 long days as a Reg Nurse/Case Manager in the community for one of our big health services here in Melbourne Aus. I also have a big family ( 4 young adult children plus partners !!) and lots of interests - just got to keep on chugging. Probably would not have done as well without the unwavering support of my husband.

Take care and good luck.

Karaliz

gwillistexas profile image
gwillistexas in reply to Karaliz

Karaliz, good to hear from you & glad you are doing okay. May I ask, are you still in the trial? Happy New Year! 😊

Karaliz profile image
Karaliz in reply to gwillistexas

Happy New Year to you too Gail

The long term safety extension arm of the OCA trial finished in December ( had my final trial appointment in early December). As you can imagine I was anxious about accessing OCA as it is not available in Australia. However my Dr liaised with the drug company and they have supplied it for 6 months. Will have to wait and see after that - surely it will be available here downunder soon !!

I believe you were waiting for an appointment with a specialist - has that occurred yet?

Karen

gwillistexas profile image
gwillistexas in reply to Karaliz

Karaliz...Thank you. Happy New Year to you too. Hope it will be a good year for all. Glad your dr was able to work with Intercept. Hopefully Ocaliva will soon be available in Australia. It isn’t available in my area & is sent UPS from North Dakota. Yes, I’m still waiting. Frustrating. This man is way past due, lol! The hospital is still doing their thing but that’s a good thing when all is said & done. Any idea how long before Intercept releases their findings on long term safety? Hope it will be sooner than later for us little guinea pigs😅. Kinda what I feel like. So good to hear from you. Stay in touch & take care😊

Karaliz profile image
Karaliz in reply to gwillistexas

Thanks Gail. No I'm sorry , my Drs and I are really in the dark about any findings that the LTSE may have revealed. Really hope your appointment is soon and you find it satisfactory. I look forward to hearing how it goes and in the meantime take care and keep well.

Karen

gwillistexas profile image
gwillistexas in reply to Karaliz

Thank you😊. I will let you know. Take care💜

gwillistexas profile image
gwillistexas in reply to Karaliz

Karaliz...I received anemail today from Intercept, announcing Investors Meeting Jan 9th. I will be keeping close watch. Looks like it will be a very informative meeting. 😊

in reply to Karaliz

Hi Karaliz, It's good to hear how you have managed to 'chug on' and I hope that continues well for you. I wonder if you know of any ongoing studies into a possible connection between pre-eclampsia and AI conditions including PBC? I had pre-eclampsia as an "aged primipera" (! medical term !) At one time when trying to find out about PBC I found online-report of a study in Australia, but haven't found it since. It would be interesting to know if there's an established link and if so, if any study continues to use this as a means to understanding the trigger for PBC.

Karaliz profile image
Karaliz in reply to

Hi there

I did not know about the possible link between PE and AI conditions - very interesting and another piece of the puzzle perhaps. I have 4 children but until diagnosed with PBC at 38 was rarely - if ever- unwell.

Happy New Year and keep well

Karen

jane1964 profile image
jane1964

Hello I worked for 11 years after diagnosis although I reduced my hours due to very bad fatigue.Last year it became too much so I took ill health retirement which I expected to be a fight to get but was ok, I have another couple of autoimmune diseases vasculitis abd sjogrens syndrome.I hope you do well.

HelenTM profile image
HelenTM

Hi I work full time. I am a Depute Head teacher. Sleep more than most I would say. Other than that I know I do better when busy. I am stage 4 too. My kids are grown and live away. X

Welcome to this forum Jess5377. I retired at 60 and was dx two years after. Fatigue made previous ?5 years very difficult to work due to reduced cognitive and physical abilty. Without diagnosis it would have been difficult for my employer to be flexible enough to enable me to work in the way that it would have been possible for me to continue. And I didnt have a clue that it was a recognisable and diagnoseable condition. But even so, I made the best choice for me at the time which was to retire to avoid the stress that went by nature with my job and the added stress of knowing that I wasn't pulling my weight in the team. Good decision for me because I find that stress is a major driver of PBC flare ups in me. I also find that the more active I can be, at my own pace and choosing, the more comfortable I am. I see gastroenterologist annually. He hasn't suggested hepatologist. I may do so. Very best wishes to you. I hope you find this forum a help, that you won't be worried, instead be informed, and that you sign up free to PBC Foundation and take time to see how much support and information they provide. Best wishes.

JuliaGal profile image
JuliaGal

My biopsy report from 3 weeks ago also stated chronic hepatitis as diagnosis, and later talked about PBC. Im wondering if your doctor said the chronic hapatitis was something in addition to PBC we need to worry about? My doctor said no AIH...or is chronic hepatitis a catch all phrase?

Jess5377 profile image
Jess5377

It says chronic hepatitis with features suggestive of primary billary cirrhosis, with mild to moderate inflammation (grade 2) and periportial fibrosis (stage 2). I work in the operating department for the hospital that did my biopsy so I was able to give the pathology department copies of all of my blood labs, which aided them when looking at the biopsy. I think it can be used as a catch all phrase sometimes. My Gastrointestinologist tested for Hep A, Hep B and C also.. I had high lft's for 2 years that my primary dr told me about but she never followed through on them. It wasnt until I went to an endocrinologist that found that I had hoshimoto thyroiditis and high LFT's for me to be sent to the Gastrointestinologist. He 1st thought I may have had celiac disease and did a lot of tests for that...it was all normal. But that's where he was able to ask more questions and run more tests those came back bad so he wanted the biopsy. I'm waiting for my follow up to see if I will be put on medication and referred to a liver specialist. I am also waiting for my follow up with the endocrinologist she did a adrenal function test that tests your cortisol levels with your acth hormone. My cortisol was normal but the acth was low....so I dont know what that means. It may be secondary adrenal Insufficiency but I'm not sure. I'm ready for answers.

JuliaGal profile image
JuliaGal

Thanks for you answer. I had all the blood the usual liver enzymes and AMA tests done. I have not had as many things checked as you. Hopefully you get some answers soon.

Suzielbeau profile image
Suzielbeau

Hello, I was diagnosed about 5 years ago at stage 1 / 2 and fortunately responded well to Urso. I work full

time running my own business, and also have a young family. The fatigue does get bad some days, but I feel better in other ways when I am busy and always try and power through, even if that means going to bed the same time as the kids some nights!. About 6 months ago I made the decision to get stronger and fitter and started working with a personal trainer and making strength training a priority. It was a real struggle, and some days I just wanted to lie on the floor and cry, but I have to say I now feel better and have less fatigue than I have done for ages. Possibly placebo effect but it works for me :-)

annscot profile image
annscot

Have you been checked for Addison Disease? The symptoms for PBC are similar. Both are auto amunne conditions. If you have taken or been given an injection of cortisone levels will not be accurate! Hopefully when you are on medication you will have more energy to enable you to do your job xx

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