PBC recently diagnoses

Hello, I was just given the news of stage 1 PBC, and have started Ursodiol 300 x2. Nauseated ALL the time. Any suggestions?

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Hi Seaside Siren

When I was DX 12 years ago I too was nauseated. My GI recommended taking 1 pill with breakfast and 1 at bedtime. I also ate small meals during the day instead of 3 regular meals. I drank plenty of water. The nausea will pass in a few weeks. Also, try and avoid spicy foods. I hope this helps. I'm here for you.

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Thank you very much for your reply. That is what I have been doing, 1 pill with my breakfast and 1 with my dinner and eating small meals when my stomach can tollerate. I am drinking tons of water, :) I didn't do spicy foods before, so that will not be a problem. I had called my doctor, because usually if I have ever had a side effect, it lasted only about a day or 2. He told me they should go away in a couple of weeks, but some times they don't. I am hoping I am in the category of those fortunate people where it stops soon. Thanks for the support! How have you been since your diagnosis? That is a long time, and that makes me happy and hopeful!

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I just started it last month and for the first two weeks I was very nauseated as well. I am taking 500mg 2x a day. One in the morning and 1 in the evening. By the third week it was getting so much better and now I don't feel sick unless I don't eat enough when I take it. So hang in there it will get better!

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Hi Seaside Siren
Lately my itching is very difficult. Doctor gave me Atarax which is like an antihistamine. I can only take at nite because I get sleepy. I've tried breaking them in half but I still get sleepy at work. My aches and pains are getting stronger especially the restless legs and thigh pain. I see my GI in August and hopefully there is something else he can do. I try not to dwell or wollow but sometimes I get very down, so I just do something like go for a long walk, read but I also think about other folks who have overcome very serious health conditions and that keeps me positive. Thank you for your concern and friendship.

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Thank you both for your replies! TC- I hope this goes away soon for me as well. Glad you seem to have adjusted to it and are able to eat :)
3sons-I have just started with the itching, but it only seems to be affecting my shoulder and my head and neck area, bell occassionally, but the shoulder is where it itches the most. Right now I am lotioning multiple times a day, wondering if using an anti itch relief topical would help. I do not want to have to take any more pills that I already do, and I definitely do not want something that is going to make me more tired than I already am. And I felt weapy yesterday, emotions seem to be running at full steam yesterday and today. Normal?
I hope you feel better, long walks always help to ease the mind, it is just way to hot here lately for me to do that. When you take the Atarax, do you wake up groggy too? I hope the GI doc has good news for you, maybe give you something different for the itching. Hang in there, you have been dealing with this a long time. And thanks for your new friendship as well.

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Hi Seaside

Being weapy is normal. That is how I've been today. Tough day at work when I feel like this. When I take the Atarax, I do wake up groggy sometimes. I need to talk to the doc about that. My neck was so itchy today I made red marks. No walking today, way too hot and then the storms were incredible. The northeast was hit hard today. Stay in touch

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I also have PBC I was diagnosised in January 2012. When the disease was found I am in stage 3 of 4. Depression is kicking my butt! The constant itching, weakness, fatigue, can't sleep well and that is killing me at work. I horrible rashes on my back and knees. Someone mentioned the medication for itching, It is very differcult to take it and work, If I take it at night so I can sleep. I have a terrible hangover the next day. My family and friends do not understand, when I say I am tired or do not feel well. That is another differcult issue, I believe some of my depression comes from other people. It to the point I just avoid them I spend most of my time alone. I get tired of hearing you have to eat, I am now at 86 pds. There advise ticks me off! They truely don't understand who sick I am. I know I have be be positive but its hard sometimes.

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Dear Laverne And Other PBC Friends

I Also Was Diagnosed with PBC In Jan. 2012, It has been a emotional roller coaster, I am on ursodiol 1200 mg a day, Imuran, and plaquenil and hydrocodone for pain, also have arthritis, It has been helpful reading the posts, I can relate about the depression and the itching and a lot of things but i battle most with the right foods 2 eat, most everything i eat bothers me, my stomach hurts most of the time, upper right side. The Imuran has taken away most of the rashes which they was calling angioedema, they was so bad for so long, they were all over my body, took the docs long time 2 diagnose me, finally they did a biopsy.
I know it could be worse, and there is other people worse off so I try and look at it in that way, it helps me 2 stay positive, when I'm like a slug and don't feel like moving I make myself get up and say" THE DAY IS WHAT WE MAKE IT" I turn it around, I have 2 for me, so maybe in sharing this will helps others....I'm so glad I found you All....:)

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Seaside Siren

I am wondering if you have checked the weight chart for the correct urso dose. 600mg a day seems like a really low dose, unless you are a lightweight. PBCers.org has a dosage chart and great general info and a support group. Anyway, the dose for urso is 13-15 mg/kg. It is easy to convert lbs to kilograms, or use an online calculator to do it. Wishing you well

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Good morning to everyone, I recently was diagnosed with PBC last week and started on the Ursodiol. I'm not sure what stage I am in, maybe after I have my CT scan. I would like to learn as much about this as possible. After hearing some of your stories I feel Blessed my few conditions are not serious. I had my first off the chart blood work in 06 so can anyone tell me where I am with this disease? Thanks for any info and I will pray that we as a family beat this soon.

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There is plenty of info on PBC, some of it tho is not current, so I would stick to the majorly respected websites. Don't think you will get a stage from a CT scan. There is also a PBC group called PBCers.org if you want to join that site as well. I was dx with PBC at stage 3 (by biopsy) in 08 and recently moved to stage 4A. There are 2 guides to the functioning of your liver the MELD score and the CHILD-Pugh score....there are calculators on line where you can fill in your required lab numbers and it will calculate the score for you. Hopefully you have caught it early and will have many many years free of symptoms.

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For those of you with PBC... I had both PBC and Autoimmune Hepatitis since 1993. Let me start with some advice first. GET A HEPATOLOGIST, NOT JUST YOUR GI!!!! It is critical to have a very knowledgeable hepatologist for the sake of your LIFE! Now, I'll say Initially, it was awful....I itched so badly! I too was on atarax and was half asleep most of the time. My doctor put me on Questran - I had to drink it every morning. It worked and i was relatively stable and I didn't take atarax again until Jan 2012. I was very tired but I still worked full time until Nov 2011. It was around mid 2010 that I started to get ascites. I was tapped every few weeks or months - depending. Then came Nov 2011... All bets were off... I was very sick and had lost 45 lbs. I started being tapped ( drained via paracentesis) every week until Late Nov 2012. When I started itching again in 2012 I was going nuts.....it is horrific and after about six drugs, my hepatologist put me on a combination of rifampin and naltrexone. That was the key. I was also on lasix and aldactone for the ascites. I did not want TIPS doe to the 20% chance of hepatic encephalopathy, thus I was drained every week. In January 2012 i went to one of the premier transplant centers in SE Pennsylvania and was evaluated for the transplant list and was accepted...albeit very low on the list. In Sept 2012 my hepatologist said my MELD was 10 and while I was very sick, my MELD was too low to be considered for a deceased donor transplant before I would probably die from all the other symptoms that had nothing to do with my MELD score. My transplant coordinator and my hepatologist strongly recommended that I consider a LIVING DONOR. they take a lobe of someone else's liver and give it to the recipient. The lobe left in the donor and the one given to the recipient both regenerate. Now, the donor must be between 21-50 years old and compatible blood type. The donor has to still have a gall bladder and be in good shape - BMI under 30. So started my journey.... My daughter asked me if she could please be tested to be my donor. She went through many tests as did I and right after Thanksgiving she donated part of her liver to me and we are both doing great! I have not felt this good in so many years!!! The moral of this story is there can be light at the end of the tunnel, you have to believe - get an excellent hepatologist and do everything he tells you to do! - consider the living donor option..... There are not enough deceased donor livers and most people are near death by the time they get to the top of the list - the Living Donor option is truly a wonderful alternative. People see my daughter and me together and can't believe it was just a couple months ago. I asked her if knowing everything she knows now, would she do it again, she said YES, in a minute, it wasn't that bad! Those were her words. Find an experienced living donor program and ask questions! This is not for everyone but it saved my life. I never see anyone on all of these boards mention Living Donors. UPENN - University of Pennsylvania Hospital has a fabulous living donor program. Many prayers sent to everyone and if I can answer any questions, please ask. God bless you all.

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