Trying to understand

[Bakerc]

Newly diagnosed last week. It seems im having a little more problems then what I have been reading from other's. I suffer with upper right abdominal pain and have missed work alot because of this. I had my physical on Feb and thats where my enzymes showed they were elvated. Does anyone else have the pain.

[Hidden]

Yes and most of us do. My doctor called my husband today and told him how lucky I am that I was diagnosed so fast. I started having cramps last sept. So I went to my gyn. She ordered several test and with each test blood work. I got perfect enzymes, sept through early Jan. Then late Jan I was slightly elevated. From there I was sent to a gi dr. At the same time my husband made me an apt at Mayo. I'm in good hands right now. But yes I get pain still on the right upper side. Most of us do. The dr said that we have no nerve in the liver that it's the sack around the liver. Either way it hurts

[Bakerc in reply to Hidden]

Thank you for the response. I have been suffering with abdominal problems for years. My GI Dr just sent the medicine urso i think it is to my pharmacy but i have not picked it up yet. Does this help with the pain? I also have depression and anixety so I have always thought that me being tired all the time was due to that. Do you know how the can tell what stage of PBC your in?

[Hidden in reply to Bakerc]

I'm in USA. Where are you? Do you know what yur liver enzymes are?

Urso took care of me real quick. I also have aih and was diagnosed high doses of prednisone. I am like you. I got the elevated enzymes in late Jan and started meds in feb.

[Bakerc in reply to Hidden]

Im in the USA also. Not sure about my liver enzymes.

[Hidden]

Drink plenty of water and try not to ever drink alcohol again.

I gave up the salt shaker. That was a problem for me. I also gave up my sweets.

[Bakerc in reply to Hidden]

Thank you. I havent drank any alcohol since Nov because it was making me very sick.

[Hidden in reply to Bakerc]

Urso worked very fast for me. So did prednisone.

[Bakerc in reply to Hidden]

I dont. All i know is they were elvated. But my last test they had came down to almost normal. Has this affected your work or day to day life?

[Hidden in reply to Bakerc]

I also have autoimmune hepatitis with pbc cross over. My Dr is trying to put me in remission with the aih. So the answer is yes for now. My prednisone is down to 20 mgs a day and I'm also taking azathioprine and the Urso for the pbc. I started out taking 40 mgs for a few weeks, them after blood work went down to 30 then 20. I couldn't work now a full shift. I get distressed at times. I do plan on going back to work. When my prednisone is low enough. I was fine when diagnosed and then I believe when first prescribed Urso I was ok then started getting real tired during the day. I had to stop taking hydroxyzine with larazapam

[Bakerc in reply to Hidden]

Sorry to hear that. Hope you start feeling better. I really dont undrrstand much of this condition..all I know is i feel like something is always hurting. I will keep you posted. Hope you do the same.

[Hidden in reply to Bakerc]

Why do you believe that you have pbc

[Bakerc in reply to Hidden]

I had a liver biopsy on may 19 that come back with the diagnose. And a positive AMA.

[Hidden in reply to Bakerc]

Did the biopsy say what stage you are in?

You really should have a copy of all your blood work and medical records

[Bakerc in reply to Hidden]

It did not say what stage. I see my GI on June 28. But im going crazy with questions. So glad to have found this group.

[Biddyb in reply to Bakerc]

This is a great group lots of other sufferersand many posts put your mind at ease. Make a list of all questions you need to get answers to as you are sure to think of something after your consultation. Keep all you blood reports as advised. Good luck

[Bakerc in reply to Biddyb]

Thank you.

[iagra]

I've diagnosed with PBC last year. I started having pain in the right upper abdomen just a few weeks ago, but, it is consistent. My followup appointment (I had today wave ultrasound and another set of blood work) is in a couple of weeks, so, I'll be asking my gastro about the PBC related liver pain.

I'll update this thread, after I talk to my doctor on June 14th.

All the best to you!

[Bakerc in reply to iagra]

Thank you. I was just officially diagnosed yesterday after my Gastro Dr received my Biopsy results. Was told over the phone with a appt made for a month out.

[Buddy2017]

It's the only real symptom I have but I only get it when I'm eating , was diagnosed 6 years ago.

[Bakerc in reply to Buddy2017]

Before my diagnose i coudnt eat. I lived off of water and lost 23 pound in a matter of 4 months. Then my enzymes came back elvated. My dr sent me to the GI dr. Where they started thinking PBC. I had my Biopsy and it confirmed. This is all very new. I have not hsd a follow up yet to talk sbout my diagnoses but they did call in the Urso. I will probably start that today. But that pain seems to be through out the day for me. Thank you for your reply.

[Biddyb in reply to Bakerc]

Been diagnosed since 2008 with PBC and been taking Urso since 2010 just started with pains in right side. Still waiting to see if I have AIH overlap. Was treated at first with steroids and then my gastro put me on immunosuppressant which made me really ill. I have now changed to another hospital and seeing a hepatologist. Find out as much as you can and make the most of this site. Good luck

[Shulsey]

Welcome, I too was happy to find this site. I was diagnosed in 2012 with zero symptoms. Went to the ER for unrelated issues & ended up being admitted due to extremely high enzymes. I was at stage 2/3. Im now at stage 4 with a possible cross over of aih. I have had URQ pain. I see a heptologist at the Indiana University Hospital & I also have a GI Dr. They both have stated that the pain is very common with us PBC'ers. But isn't because of the actual liver itself because there are no nerve endings in the liver. It is the area surrounding the liver. Mostly due to the liver becoming enlarged. In my case, my liver is enlarged along with my spleen. My spleen is actually the same size as my liver, crazy isn't it!? I feel full all the time & basically eat when I start to feel nauseous because I have no appetite. The doctors say that it has to do with my liver & spleen weighing down on my stomach. Unfortunately, the Urso will not help the pain. Im working on getting something prescribed to help me throughout the day with the pain. Sometimes it's worse than others times. Best of luck to you & we are all here for each other. To listen, help, cry, & lift up.

[Bakerc in reply to Shulsey]

Thank you so much.

[4pjx__ in reply to Shulsey]

Shirley, I have also been diagnosed a little late. I have been on the Ursidol for a couple of weeks. I had a liver biopsy and they are saying it's at the fibrosis stage. Do you feel like the Ursidol works for you? Have they discussed other medications, From the biopsy they are thinking I could have AIH crossover. I am scheduled to see a heptoligist on the 16th. Do you feel going to a University clinic is more beneficial. Because now I am wondering if that is what I should be doing. I feel mostly fine. Since diagnosis I have noticed a tingle-y spot on my back. Don't know if it's part of the disease or stress. I feel like this is maximum stress.

-Pam

[Pamela4475 in reply to 4pjx__]

I have a tingling sensation in my upper back... have not noticed so much since I started urso but that could be a coincidence, Pam G

[Shulsey in reply to 4pjx__]

My insurance just covered the new medication Ocaliva. It's 5mg. Im starting this because my hep Dr feels that the Urso isn't working on its own being that I've progressed rather fast in the last year. You take this with the Urso & the Ocaliva acts as a type of booster to the Urso. I have been diagnosed with cirrhosis along with varicies. Since I was at cirrhosis stage my GI sent me to the university hospital to a heptologist. Yes, I feel my hep doc is more on the up & up of this disease. & the tingling area on the back for me is about midway & it's by my spine. Is that familiar to your? I was wondering about that because it happens any time I stand to do dishes or when Im folding laundry. They say we need to be as stress free as possible with the varicies. It's difficult with small kids lol.

[4pjx__ in reply to Shulsey]

Oh, you have small children? That must be tough. My tingling seems to be between my left shoulder blade and spine. It started one day when I was doing a workout with 15 lb weights. Now it's been a few weeks and I notice it most of the time. It isn't painful or anything. I jjust notice it. It's good you started the Ocalvia. I'll send up prayers that it works for you. I am reading they have good results with it.

-Pam

[Shulsey in reply to 4pjx__]

Not really small but between myself & my fiance we have 4 kids. I have two girls 18 & 8. He has two boys 10 & 8. Yes, it is tough. My 18 year old just graduated high school & our 8 yrs olds will be in third grade, the 10 year old is in fifth. The tingling is in the same area as mine for the missy part. Im sure it has something to do with everything else. Our digestive system controls a lot of other things. Once it stays messing up things fall in behind it. Oh I also have ulcerative colitis & hypothyroidism. Like I says, or digestive systems control a lot of other things

[4pjx__ in reply to Shulsey]

Well you do have your hands full. I have a large hiatal hernia. It hurts sometimes when I eat. I was just in AZ visiting my sister and she said the very same thing about the digestive system. Try to stay well my friend. This is the best website support group I have found. Please keep us posted on your progress.

-Pam

[Bakerc in reply to Shulsey]

How do they tell what stage your in? Im really going crazy thinking about how long I have had some of the systems. My liver enzymes are back to normal with the exception of my GTT. I think that is the test anyways it is only slightly elevated. But the Liver Biopsy showed PBC.

[Shulsey in reply to Bakerc]

They scan pics of your liver to where they can see the texture. Bumps or nodules. After fibrosis, which is the scarring, the cirrhosis starts. Please don't quote me on this but it sounds like you may be around stage 3 if your tests are showing fibrosis.

[Bakerc in reply to Shulsey]

Will update once I see the GI Dr.

[Shulsey in reply to Bakerc]

Oops, Im thinking the alkaline phosphates have to do with the enzymes. Someone correct me if Im wrong please. I get all the tests confused from time to time. That's the brain fog at work unfortunately

[Shulsey]

I haven't cut all sodium out. I've been told by my specialists that a lite sodium diet is good. Not to exceed over 2000mg. a day. Sounds like a lot, but it really isn't. I use lite salt & salt free Mrs Dash. The lite salt is 50% sodium free. Also I've been told to stay away from fatty meat & no alcohol at all. I will admit that I still enjoy a good steak from time to time.

[cfsummerford72]

Yep that pain is what set things in motion for me. I was told it was my gallbladder. Haf that removed. Appendix removed. Ive been told it was pancreas. All the time my enzymes were off the charts. Then i was told i had hepatitis. Now a liver specialist tells me pbc. In the end it all equals to im screwed!

[Bakerc in reply to cfsummerford72]

I also had my gallbladder removed a year ago. Try to stay positive. When were you diagnosed with PBC?

[cfsummerford72 in reply to Bakerc]

February of tjis year but my enzymes have been high since 2012.

[Bakerc in reply to cfsummerford72]

I find it crazy that not alot of dr's are familiar with this condition.

[cfsummerford72 in reply to Bakerc]

I know like you i have so many questions. I had a liver biopsy too the doctor never put me in a stage either. All I keep thinking is my blood teports from 2012 show elevation. So to me like you said how did someone miss this. Sad part is i dont think the doctors are realky familiar with this disease. My liver specialist told me hes treating another patient with this and shes at the liver transplant stage. You mentioned depression. I have been struggling with this.. ive never been in meds for depression but recently i was asked to be put in them because i had to regain control of myself and it is supposed to help with the fatigue. I was put on 10mg of Prozac. Have to remember it filters through our liver so nothing that'll do more damage. If at anytime you feel you need help please get help. This is an incurable disease. We are here for you because we have or we are going through this too.

Connie

[Bakerc in reply to cfsummerford72]

Thank you Connie. Very glad to talk with people who understand.

[tonia17 in reply to cfsummerford72]

My liver enzymes were 1700 once I was diagnosed in March/17 what were yours? Mine went down by half after 3 weeks in Urso...

[Bakerc in reply to tonia17]

My enzymes were not very high. Just elevated. I had been drinking up to a month before my test. I had to stop because i was getting so sick from it. By may they were normal all except my GGTP that is still slightly elvated and my AMA it says its greater than 320. Not really sure if thats real high or not. I just started URSO yesterday after my Liver Biopsy.

[iagra in reply to cfsummerford72]

Are you in the US? What state? In WA state, with elevated LFTs and abnormal AMA, the next step is ultrasound (to exclude obstruction) and then liver biopsy. This is how I was diagnosed. I wonder, what steps your doctors took to diagnose your PBC. Now, I have pain in the right side.

Don't despair. PBC for most is a slow developing disease. I wish you all the best!

[liver-bird]

Hello, I used to get discomfort on the right but since taking urso my numbers are better and the discomfort has gone. Hope the same happens to you. 😃

[Bakerc in reply to liver-bird]

Thank you. I hope so too. So are you symptom free?

[Pamela4475]

Yes I do everyday on and off and sometimes goes to back. I have had it since my enzymes went up and had the tests and told earlier this month that I have pbc.... I see liver spec on 6/21 and have a list to ask and that is on this list.,.. I will post what I hear

[Bakerc in reply to Pamela4475]

Thank you Pamela. I have not been to see my GI since i got my liver biopsy results..they told me over the phone. My appt is 6/28. I also have so many questions. I too have made a list. Keep me posted.

[Pamela4475 in reply to Bakerc]

Will do... I was just diagnosed also and told over the phone by immunology office... of course I googled it and freaked out. But there has been much progress I hear over 20 years and we have it better now.... I will pray for us and all our PBCer sufferers

[tonia17 in reply to Pamela4475]

Most likely, from what my dr and I have found out, my grandmother died from this back in 1989. She had all these symptoms and once jaundice set in her liver was too far gone (at that time) for a transplant.

I think about her often. I remember the pain she was end near the end...it makes me tear up...

How many of you have had this run in your family?

My dad and I ran into my childhood doctor a month ago and daddy mentioned to him about my PBC. Dr Smith said there is a lot that can be done for it now & they are learning more all the time.