PBC Foundation
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Hello

Hello I’m posting again because I’m just having a dark day. I’m not trying to be negative but I’m still new to this as I start Urso in a couple days and I’m waiting to find out if I have AIH as well as PBC...doctors are ruling it out by blood tests results ...Just been hearing a lot of stories about life altering PBC ..that it has been difficult for people to get out of bed and go to work. I’m 39-year-old single parent and have responsibilities with my daughter and working full-time and I know a lot of u have so much responsibility as well. I’m just grieving right now, the new normal ...so again I’m not trying to be negative but I’m just having a dark day would love some comfort as I feel very alone

God bless you all.

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I was diagnosed a little over a year ago. They were also thinking that might have AIH aa well as PBC. A trip to the hepatolagist revealed "no". Phew! That said, I was diagnosed at stage 3, severe fibrosis. I am pretty sure I have had it for 20 years...I just didn't know. Honestly, I didn't go to the doctor unless I was really sick. I'm 64 next month and I have gone all those years with PBC feeling pretty good. If you are at an early stage and not having any irritating symptoms you probably won't even notice much that you have PBC. I haven't noticed too many side effects of Urso and with any luck at all you will get along fine with it too. My experience so so far has been not nearlynas bad as I thought it would be. Good luck!

Pam

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Thank you for your words

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Hi,

Im sorry your feeling bad. I do understand how you feel. I was diagnosed 2 years ago but probably had it longer or that's what my hepatologist thinks. I've never had a fibroscan but, in 2016 they did a biopsy, an MRCP, an ERCP, 2 CT scans and loads of labs. I'm not really sure what stage I'm in. I think I need a fibroscan to truly determine that. You can't be over weight and have a fibroscan. Unfortunately, I am. So, for now it seems I'm constantly trying to lose weight. But, then I feel good and try to forget I have PBC. I end up cooking and eating badly😔. That's my thing.... I love to cook for friends and have people over for dinner. Just good food and friends ❤. I don't do it as much anymore. But, I still bake and cook for my family. Maybe it's all psychological and I don't lose the weight and can't have the fibroscan cause i "don't" wanna know what stage I'm in. I don't know. 🙄

Try not to over think it. I know that's easier said than done. Try to remember it's a "very slow" progressive disease. Many woman live with it their whole lives. The medication you'll soon start slows it down even more. Take a deep breath, read all you can on this site. It'll get better❤. Keep us posted how you're doing. We all learn from each other.

Stella

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This means a lot ! God bless

just need a good cry and a hug lol

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Hi Ktltel, I was told by my GI that the initial biopsy determines if you have scarring and determines your stage. If you had a biopsy, they should've determined your stage. I would go back and check with your doctor the results of the biopsy. I've done biopsy and then two fibroscans after that, they were consistent with the results of the biopsy, in terms of staging.

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Hi,

I learned on this site that biopsies are not the gold standard anymore. They only determine what's happening in your liver from a very tiny sample taken from one tiny area. I was told the biliary tree goes throughout the liver. The liver is a huge organ. PBC can be wreaking havoc on or in a different area of that large organ.

This is what many have told me. And, that fibroscans are a more accurate tool for defining where one is in their PBC journey.

Stella❤

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Are you in the US? There is another test (different from fibroscan), it's called Ultrasound with shear wave elastography. Maybe you can try that? For some reason, everybody from the UK, only mentions fibroscan. But, in the US, we mostly do the wave elastography (at least seems this way). My GI actually told me that fibroscan doesn't show everything that the wave ultrasound can. Ask your doctor, if you could have the wave test instead.

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Thank you I will. ❤

Yes, I'm in Kansas.

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Great! Let me know how it went.

Best wishes!

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Where are you in Kansas? I was just recently diagnosed with PBC but haven’t met anyone else who has it. I live in the Kansas City metro area, Stilwell, KS.

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Hello, I'm in Jefferson County. Rural community. Valley Falls. I see Dr. Olsen at KUMed. Who do you see?

Stella❤

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I see a gastroenterologist, Dr. Randall Brown, in Overland Park. I was just diagnosed a few months ago and have been taking Urso. At first he thought it was fatty liver disease because my AMA was on the border, but now is slightly elevated. I wondered if it would be better to see a liver doctor. I turn 70 in a few days so am concerned about doing a liver biopsy.

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I was told to see a hepatologist. I'm not covered by my insurance at KUMED so I only see Olsen once a year out of pocket $$. He communicates with my GI and she runs everything he wants and she faxes them to him. My scans, labs, all of it. In 2 years since being diagnosed I've dropped weight, put some back on, developed dry eyes and RA. I'm 59. I'll be 60 in may. My doctor thinks I've had this for years. A biopsy said I was early stage PBC but, I need to lose weight in order to have a Fibroscan which gives one a more accurate picture. So basically, I don't know what stage I'm in.

Stella❤

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My liver counts have been high since 2012 but the GP kept telling me everything was normal. Finally, I received online reports of my labs and requested that they be further investigated. She still is not convinced that I have PBC, but the GI Dr. labels it probable mild PBC. I will be having labs done in the beginning of Sept. and am anxious to see what they show. I have dry eyes and dry mouth as well. I’ve always had arthritis, but it is much worse than it was a year or so ago. It probably wouldn’t hurt to see an RA Dr. I am sorry to hear that your insurance does not cover KUMed. That is a lot out-of-pocket. Cindy

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Yes, it is. But its only once a year so I plan and save for that visit. He's expensive and in actuality I'm not sure he's on the cutting edge with PBC information and treatment. I've learned more on this site than from him. What do you do for your dry eyes and mouth. I use Sustane eye drops but, I have to use them every 20 min. Terrible. I have a mouth rinse for dry mouth that I use at night before bed and once during the night. Such a pain. 😔

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I use Systane Ultra which is supposed to be better than regular Systane, although I only use them twice a day. I use Biotene mouthwash several times a day. I noticed that my mouth has become much drier in the last few months. It helps to sip water and chew gum. There are other Biotene products as well, but have not tried them. I have been struggling with shakiness since February that occurs in the morning so I try not to go out until afternoon. I have not seen any information that would lead me to believe it is related to PBC so I’ll have to talk to my doctor.

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Yes, mine is the Ultra. The dryness is worse at night. I use that same mouthwash too. There are several other Al's that have dry eyes and mouth as their symptoms but, I don't want to know if I have yet ANOTHER autoimmune disease! Keep in touch. Let me know how your doing.❤

Stella

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Honey

I’m in London visiting family from nz

So it’s a good day for me. But I remember dark days when I was diagnosed and reacted badly but that was 10 years ago

We are all in the same boat and are here in different ways

Some read this and respond

Others have issues themselves and just can’t today..

But at the end of the day and I mean at the end of the day you are never alone and that’s the beauty of this site

Reach out and someone will set aside their own worries and walk with you

Don’t dwell on things if you can Help it

Know that we are all here for you and each other.each day is different for us all

Be brave and face the future with love and positivity as we are - think of me right now putting my hand in your hand

Got it?

I’ve got you

X

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I keep rereading this because its so beautiful. ❤

Gives me peace.

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Thanks that makes the effort of connecting so worth it

Xxxcc

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Beautiful 💚

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Don't panic! Get all of your tests, have the staging determined. Urso or other meds (if Urso doesn't work for you), will slow down the progression. PBC is a VERY slow progressing disease, to begin with. PBC is diagnosed a lot earlier these days, which is helpful. A lot of us had PBC for many, many years, without knowing we had it, as Pam pointed out, which means, we didn't have obvious symptoms.

Stay active, laugh a lot and be optimistic. Soon, you'll know that PBC is just another thing in life, but, it's not the end of life.

Best wishes!

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hi, hope you are feeling less stressed this morning. Join the PBC Foundation (free to join) website. In the member's section there is access to the Bear Facts magazine where you can find lots of useful information in back copies. On the right of this page there are some pinned posts one of which is PBC and Life Expectancy written by the administrator who is very knowledgeable and who has a great deal of experience with PBC. There are many groups around the UK (if not from UK perhaps the Foundation can put you in touch with others local to you) and their meeting dates are published in the Bear Facts magazine.

It is not unusual to be overwhelmed by the news of PBC many of us have been where you are now, for myself diagnosed in 2006 but almost certainly had it at least 10 years prior, please never feel alone, there is always someone on line at some point to share with you.

There are some who never have symptoms and the saying of you are more likely to die with PBC than because of it holds true.

best wishes

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Hi lovely lady, sorry to hear you're having a rough day, had many of those over my last 10 years of diagnosis, it can feel very lonely at times, especially as it's not a common condition and rarely heard of, I used to hate explaining it to people. Just remember that these blue days pass, you also have a right to feel like this, it is after all a chronic condition and will not just go away, try not to beat yourself up for feeling down, tomorrow is another day, all I can say is I have learned to live with it, but it does get the better of me sometimes too. When I was diagnosed I felt very low and part of me thought my future had been taken away from me, I was just 44, self employed, 2 young teenagers, happily married. I ended up selling my business as the fatigue was so bad (I initially had Lymes disease) and PBC was found through tests. Now I have a different attitude, one of "Up yours, you're not getting the better of me" I now have a job I love, seen both my girls get married and have grandchildren, so try not to build monsters in your head, go and do something that makes you feel good today and don't think about tomorrow, just today. Bless you.

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Good morning Iris , you are not alone . I too have dark days but i have good days too . Cry cry cry it is good for you to let it all out that's what i'm like but then when i do that it gets it all out of my system and allows the good days to come back . I was young when diagnosed i was 33 yrs old but the doctors reckoned i had it much earlier than that i'm now 52 . I had a 8 & 5 yr old beautiful girls and it was difficult some days as i was so sleepy . Itched like crazy . Life has it's up and downs with this disease , but you have to learn to ride the roller coaster and you will . Don't feel you have to only say positive things on this site you can say how you are feeling and a lot of us pbcer's will talk to you . Talking about it is also very good medicine for your mental well being . If you want i can give you my email address if you are on facebook i can add you we can talk on messenger facetime it is free don't every want anyone to feel alone . Do you have any symptoms yet ? Wishing you strength , sending hugs xxxx

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That would be great thanks :)

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Hi Irisw here is my email address sharonwaddell2000@yahoo.co.uk i'll give you the other facebook details on email ok . Hope you are having a better day today 😃

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I did lots of research, got pretty freaked out, and then realized the only thing I can do is treat my body well and try to avoid toxic exposures. I moved off my boat which tested positive for mold, exercise, eat a balanced diet with lots of vegetables, and I have cut out gluten, most sugar and most dairy. An elimination diet showed I react to gluten and dairy. I started meditating and do my best to reduce stress.

If I am right about my theory, the healthier lifestyle will reduce inflammation and reduce autoimmune triggers. Hopefully that will mean less damaged bile ducts and a slower progression of the disease. The Urso clears the damaged bile ducts of cholesterol deposits and protects the liver from backed up bile causing damage.

I feel better than ever and am living every day aware and happy. Look around and you can always find something beautiful to feel grateful for. We are lucky that this disease can be found early now, and we can take steps to slow its progression.

The overwhelm will pass and when it does, come out on the other side a warrior!

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God bless

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I messaged you.

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Hello , you have come to a good place for reassurance. I was diagnosed last October , like you I was so worried . People here on this forum helped me come out of the dark days. Taking uroso has helped and I'm doing ok now.

Don't be alone with this, so many people here for you. You will feel better in your mind and body .

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I have very dark days at times. I go on though. I am married with 5 kids. My baby just turned 1. I was misdaignosed almost a year ago with PBC AIH overlap "pre-clinical". I actually have PBC PSC overlap and I'm already in early cirrhosis. That's what they say anyway. I'm going back to the Mayo Clinic next week for my 6 month imaging/testing so I'm a bit anxious about that.

Anyway... Find your peace with this. However you have to do it, find a way to make peace with your body and your diagnosis and treatment. Seriously... mental health is so important.

Everyone acts like I'm terminal, like I'm getting ready to keel over. I've received so many thinking of you cards, inappropriate comments. Ugh. Sometimes it feels like every interaction with anyone who knows is tainted with concern, sadness... Ugh.

My husband and I talk often about the fine line between optimism and denial. I'm walking they line often. I feel okay. I expect that you will feel okay most days. Make the most of your good days.

I'm supposed to be in early cirrhosis. I wake up some mornings swollen up like I'm 5/6 months pregnant... I'm most likely further along than you, right? And this morning I walked my baby 3 miles. I swam in the ocean on Sunday, walked a couple miles down the shore picking up sea shells with my family and omg it was perfect. There is a rocket launch tomorrow at 11:30PM and hell or high water I'm going to see it. Seriously, please, live your life. Don't spend one minute dying.

I'm no image of perfect mental health. Some days I can barely cope. I cry and fall into this pit of... Just darkness. I see a therapist. I meditate. I pray. But, at the end of it, I get up and go on.

I don't know if this has been helpful or not but the main thing I wanted to tell you is... Life is unpredictable. Cry, rage, grieve... But get up and go on. Find peace however you have to because mental health is important. Stay strong. ❤️

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God bless and hugs

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Hello I was diagnosed aged 42 having been unwell for at least 3 years.I remember how alone and scared I felt I worried about my children the youngest was around 11.It's a very hard thing to be diagnosed with something no-one has heard of and for me the fatigue was very bad making my life miserable.I wondered if I would see my son grow up.Now I am 53 My son is 22 my liver is stable and I hope to see my grandchildren born sometime.I learnt to handle the fatigue by getting help in the house and garden and resting.I managed to work until this year but have had to give up work as I now have sjogrens syndrome and vasculitis, in this I 've been unlucky as vasculitis is pretty rare and not connected so far as I know to pbc.

So yes it's very hard being diagnosed with pbc but in some ways it made me think about how I wanted my life to go and live for each day more.Jane

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I wanted to add a bit to what Jane said. I have a gardener. My kids do household chores and if they were not here to help out, I would likely have to hire heavy cleaning out. Balance what you can do with what you want to do. For me spending time with my babies or children out weighs washing baseboards. Things are not perfect here but... It is a clean house full of love which is more important than a picture perfect house where I'm too tired to function.

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God bless u

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Sweet Iris - I understand!!! I was feeling so depressed today - but made myself get up and out to see people. The constant pain is something I am trying to deal with as my “new normal”. That said - we are here for you! You are not alone. Thank you for sharing your struggle. Together, we can be strong. ❤️

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I’m a 40 years old male diagnosed both at 36..I almost had depression in the begging now I don’t think much about disease tho cautiously remind myself I have pbc..it is going to be hard until u see the positive effect of urso and your time passes year after year wondering when you will die 😁🤗

Just try to be strong and thank for your life and wish for another day it will be all right! 🤗🙏❤️

This site and pbc angles in fb will help you clear lots of doubt in your mind

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