PBC Foundation
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Pain

Does anyone else suffer from rightsided pain. It's what started my PBC journey and I was told it was a cracked rib. It went away but last week it came back. It doesn't feel skeletal but more like my liver is "bruised". Nothing showed up in any of my tests eg scans ultrasound X-ray. Diagnosed early Stage 1 and doctors tell me I shouldn't get any symptoms as long as I stay on urso. Feel like I'm going crazy with this pain. Nothing gets rid of it at all.

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Hello I used to get a stitch like right sided pain like something was trapped, it went away when I started urso for while and has recently returned I am sure it's something somehow connected to my liver.Jane

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I get it too. I don't think urso takes away any of the symptoms and you can get any or all of the symptoms even at stage 1. I've had the itch more recently even though my blood results have been good than I did when they were high. So there's no set rule for this.

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My Dr at Mayo said that we can get pain with inflammation

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Thanks for the replies - not feeling so crazy now. This is one hell of a confusing ride with this disease we have and I'm not sure many doctors know a great deal about it. I learn more from here than from them. Thx again xx

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GayleShepherd. I agree with you. Have learned more on this Site than any doctor could tell me

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Hi Gayle, I was diagnosed at stage 2 in 2012 & am now at stage 4 (im only 43 yrs old). There truly isn't any set rules for us. In my case I've progressed rather fast from stages 2/3 into stage 4 with cirrhosis & varicies. I have been on Urso since diagnosis ( recently started on Ocaliva with the Urso). I too was told that I had many years ahead of me before the worry of the last stage, this was told by my GI who referred me to see a heptologist because he was confused in the fast progress to the last stage. We're all different, but yet the upper right quadrant pain is familiar to most of us. I live in the states, southern Indiana. I see a heptologist three hours away at Indiana University Hospital, they seem to be very educated in our disease. I have a ton of trust in him & the way he makes sure I understand what's happening to my body. He said that the URQ pain is due to the surrounding area of our liver when it is becoming enlarged (inflamed). Our livers have zero nerves therefore, it cannot feel pain. In my case, I have a enlarged liver, & because of the enlargement of the liver my spleen is also enlarged. They are basically the same in size. I hope this helps a little❣️

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Hi Shulsey, How are you doing on the Ocaliva?

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I just started it on May 9th & my alk Phos went from 386-300. So, I think it's helping. I still have a few numbers that are either low or elevated. I see my GI specialist in August & my heptologist in set Sept. Thanks for asking😊

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Glad it's working! My motive is selfish as I start on it end of July. Curious about itching side effects, some have it some don't. Fingers crossed for you for august for normal!!

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Hi Linda,

I was never one to have PBC itching, however, starting on Ocaliva, I had absolute insane itching that the doctor and I tried everything to relieve, without result. Have heart. In a few weeks, for me, it resolved and all itching ceased. I had side effects on cholestyramine of severe constipation, so if you are prescribed that to help with the itching Miro-lax help you get through it.

Hope this helps!

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Thank you for that info it's good to know!

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Hi Shulsey, I'm sorry you are progressing rapidly now. I am newly diagnosed in March (PBC/AIH). Also, like you, have next appt with hepatologist in Sept. Started on 20 mg Prednisone, added 600 mg URSO daily. Now tapering Pred to 2.5 due to side effects. Have URQ pain, but I thought it was my gallbladder as dr nicked it during biopsy. I'm ok, after HIDA scan. But looks like the pain is normal for us??? As Buddy stated, seems like if I eat fatty food, pain comes on. Do you remember this happening? Also, I'm opting out of liver transplant, so does that mean 5 yrs max you think? How are you feeling day to day? And did say you were on azathioprine? I am being treated at Einstein in Philadelphia.

Gingham

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Hi Gingham,

I was intrigued that you will be opting out of a liver transplant. I am 56 years young and my doctor advised me to think long and hard about going the liver transplant route, when that time comes. His argument was based on my remaining quality of life living as a transplant patient. This is a big decision to make and I would appreciate your insight and reasons to opt out of a transplant, if you are willing to share. It would help me very much to hear why from a fellow PBC patient. Thank you and continue to enjoy the present!

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Sure Q8Cooper, I'll share. Mostly a personal choice. Been sick most of my life with various illnesses - AIH in the 90's, then cancer, now PBC w/AIH, plus Sjogren's, RA, bone disorder and just found out my kidneys are only functioning at 53%. Guess I'm sick & tired of being sick & tired. The Prednisone does help, but side effects for me are prohibitive. Not even sure I'm going to use azathioprine yet. My Doc, who is wonderful, wants me on all the meds. I did tell her no transplant however. It sounds like you have a very positive attitude and still young. You may be good candidate for transplant if you so choose. I have no family and I'm 63. But I do have a strong faith through it all. Thanks for inquiring.

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I tried to reply but it didn't go through for some reason. So, I'll try again. My fatigue is pretty constant but the muscle/joint pain comes & goes depending on my activities. I just threw my eldest daughter a graduation party & had little help getting it together. It was just her & I. It'll take a couple days to get back to as normal as I can be. Im not sure what the medication is that you spoke of. Could you tell me about it? According to my heptologist, who I see in Indianapolis Indiana at the Indiana University Hospital, said that buy the looks of my liver through ct scans that it'll be five to ten years before I even need to be on the transplant list. As long as my enzymes keep going down. I recently started the new Ocaliva, it seems to be doing its job. I can tell you that if I chose to enjoy a nice steak that yes, I feel pain in the URQ area. Along with other fatty meats. I hope I hit all the questions you asked. Would you mind sharing why you've chose to opt out of transplant? Im curious.

Take care ❤

Shannon

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I just saw your answered about opting out of transplant. Im a little on the slow side today due to all the stuff going on yesterday. The party for my daughter

😊 Shannon

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Hi, bet ur glad "the party's over". Rest!! The Prednisone is for my auto immune hepatitis, it's a steroid. The azathioprine (sold under Imuran) is an immunosuppresent to keep the AIH inflammation in check. It's normally used for kidney transplant patients so they won't reject. So it's pretty powerful and scares me. I wish I could go "poof" and it would all go away.

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Shulsey, Reading your message was like writing my own. I am also in stage 4 enlarged liver etc....

I take Urso and was taking Ocaliva every day but had bad side effects with it.

I went off for a month and then started once a week and now I am up to 2 times a week - so far so good. What does your doc say about your stage 4. In the beginning I was really scared but now I am taking one day at time. Hope everything goes well with you.

Shirley

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Im basically taking it one day at a time & try not to stress over it. I have good & bad days depending on my activities. It is what it is & Im doing all I can to keep my head above water. My heptologist says that I shouldn't even worry with being placed on a list for another five to ten years. I try to put all my trust in God to give my specialists the knowledge they need to help me through this. That's honestly all any of us can do. I feel that the change in my meds are doing great. So far no extra side effects. Already had the itch, so that's a given.

Stay strong❣️

Shannon

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GayleShepherd. I just had that pain for two days. Over the years I got used to getting it from time to time. I worked out the reason for this i.e. when the liver really gets inflamed it get so painful. Years ago. Luckily with me, it goes away after day or two. It feels like the right rib, but the liver is right there. I remember how sore the rib felt after biopsy 2008. We have to endure all sorts of pain with this PBC and Autoimmune. Hope yours get better soon

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I was diagnosed with PBC because I went to my GP with this same pain over 6 years ago. I only get it as I am eating and is sometimes made worse when I eat fatty foods . I can not take Urso and when I did , it made no difference to the pain. 6 years later I feel thankful that this is the only symptom of PBC I have.

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I get pain now & then. I would describe it as a dull ache. I've never actually mentioned it to my consultant before. But sounds that it could be right about it happening when inflamed x

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Jenny had enough is right. I am Stage 4 and inflammation can cause mild to horrible pain on your right side. Usually it is just mild but sometimes can be extremely painful.

Take care.

Callye

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Morning. The docs reckon there is no pain, but I get it. It's not bad but it's a little annoying reminder that it's there, I get it to the left and right of my liver x

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Hi I have upper right quadrant pain and it drives me crazy. I have stomach issues but never was tested for PBC. I’ve had ulcers Barrett’s esophagus diverticulosis colon polyps. I still have constant pain on right side which nothing helps. How would I be able to be tested for PBC and what are other symptoms.

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