PBC Foundation
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Need help explaining the pain Im in

Past two todays I have been in pain. My joints and muscles ache. Yesterday i was disoriented. Has anyone had this experience if so what did you do? I have put off going to ER and my primary couldn't see me.

Connie

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Hi, can you say a little about what your diagnosis history is with regard to PBC, to help us comment? Are you on Urso? Were you diagnosed with PBC because of high liver function tests (lfts ... especially ALP and GGT?), 'and' AMA- M2 present (one of the most common forms of diagnosis)? NB you need both these, or one plus a liver biopsy that shows damage to the miniscule biliary tubules that is typical of PBC (NB in early PBC, not all areas may be affected).

The most common 'symptoms' of PBC are fatigue, the muscle and joint pain that you describe, as well as itching, but 'brain fog' and disorientation can also happen. However, you should not just be diagnosed with PBC on 'symptoms', alone.

Hopefully more folk will come by with comments, but it's hard to advise without knowing more.

I would talk to the trained advisors at the 'PBC Foundation' - they set up this site. There is a link to their website at the top of this page, which will show their email and phone contact details. I would also study the site and try to learn as much as possible about PBC. Sadly, it's one of those conditions where we have to become our own best experts.

Hope this helps for starters, take care. Meanwhile try to coddle and spoil yourself; the best medicine for all autoimmune conditions is to de-stress and try to have fun - easier said than done, I know ... but do try to relax and do things that make you happy.

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Hi cfsummerford72

When we have PBC I believe there is a tendency to think that everything that occurs is PBC related however that is not always the case. Was the disorientation like brain fog or were you unsteady on your feet? I think in your earlier posts you have mentioned a painful jaw - do you still have that? You suggested that it may be down to stress, is that still the case? Aching joints and muscles can be down to arthritis or RA so I think a visit to your primary for tests should be high on your list. Also read your URSO patient information leaflet (PIL) to see what side effects are suggested, I cannot see any mention on my PIL about joints.

Get back to us and let us know how you are doing.

best wishes

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I have been diagnosed with PBC because of high liver function test and positive ama since 2012 but just labeled in February of this year. The disorientation was like a sense of being lost during a task. I struggled not like vertigo of being dizzy. The pain i am experiencing is like arthritis but all over shooting pain to the bone. The balls of my feet hurt to stand on them. I called GP cant be seen until Aug 21.

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Yes I get that pain in my feet now that I am on urso...

Since its so acidic it causes inflammation everywhere in my joints...for a few weeks I stopped taking the urso and all my aches stopped my energy went back up but I realized I need the urso to help force extra bile out of my liver so I won't get more blockages...sadly the stiff joints and aches are a common side effect of urso as well as weight gain. The brain fog has lots to do with the inflammation it's not just making your bones and joints swell it also causes inflammation in your brain and all through out your body. For me the only thing that helps is an alkaline based diet

I hope you feel better soon.

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Im sry, but according to my heptologist at Indiana University Hospital the "brain fog" is not due to inflammation in your brain, far from it. It comes from our liver not being able to filter out the toxins in our blood stream. Because of this toxins like ammonia build up in our blood then effects the way our brains function. Causing confusion, a loss for words, trouble concentrating. We would all be in some serious trouble if our brains were swelling. Im currently on a medication called Xifaxan which is used to help break down these toxins in our blood & helps with our concentration. This is called Hepatic Encephalopathy or HE. I'd hate for those of us who suffer this brain fog to be misled. Please research these things before assuming the causes.

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One more thing, I've been on Urso for a few years now & have never had issues with weight gain or pain dur to the medication. The joint/muscle pain I've dealt with is due to another autoimmune issue. Some end up with rheumatoid arthritis which is common with PBC or in my case my neurologist is thinking more along the lines of fibromyalgia. It's unfortunate for us PBC'ers that we will most likely end up with multiple autoimmune issues. I apologize if I offend anyone with my information but I have learned since I started seeing me heptologist that he is extremely educated in PBC. I pray this helps someone.

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You may want to research the urso weight gain connection

And also research the urso inflammation connection there is plenty enough information out there about it...so let's not mislead others either perhaps it's either or both.my hands and feet are always swollen on the urso and i have severe bone pain .

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I haven't gained weight sunce February Ive lost 14lbs. I did have something similar to lock jaw shortly after starting urso in February. That has gone away. My body just throbs like when you're cold to the bone. Its a miserable feeling.

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We're all a little different with the side effects. I can't keep weight on. I was simply explaining my experience. But the brain fog is from to the toxins in our blood affecting the way we think. I have been diagnosed with HE.

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Thank you i cant be seen until aug 23rd to a lical GP but he has a background from Mayo. On that same day im going to see a rheumatologist bc I wasnt sure if tjis was arthritis. Thank yall fir rhe information

Connie

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I am also on xifaxan as well as lactulose

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My wife Judith was first diagnosed with non a non b in 1985 then it was hep c and finally 15 years ago PBC she is 81 years old. Had polio when 16 years old left leg.

She is now stage 4 liver cerouses all the goodies bleeding in the stomach five operations, 6 units of blood, water retention legs and stomach, arms shaking severely and so on.

Recently developed severe pain in the back and legs, cries when moved, now taking Lyrica which has helped with the pain.

The latest is brain fog as you mentioned taking Xifaxan 2 a day.

She was going well no bleeding or anemia 114 liver function all ok then yesterday almost in a coma eyes closed unable to speak unable to eat or drink, today a bit better eyes open able to give her the tablets and hand feed. What is the trigger.

Four Ursofalk 250 capsules a day has has enabled he to live with PBC for the past 15 years

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Thank you that explains a lot

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I hurt all the time but the brain fog may not be from inflammation. I am on urso but am also marilax for opioid constipation. I take lactulose for my liver. When you have pbc it causes to much ammonia to stay in your body. I was misdiagnosed with dementia. With i went to my specialist they said it was not dementia. It is caused by the ammonia in your body. The lactulose helps get that out and clears up the fog.

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Sugardoodle, if you go to my profile & look at my posts there is pic that has the message sent from my university heptologist on my cause of brain fog, again, we are all a little different in this battle with PBC. It is due to the amount of ammonia in my system which affects the way the neurons in my brain function. Im unclear on why your Dr has you on both the Xifaxan & Lactlose. The Xifaxan acts as a extremely strong antibiotic that takes out the ammonia. I cannot take the Lactulose because I also suffer from ulcerative colitis (UC). If I took something like Lactulose I'd be in the bathroom all day haha. My insurance gave me a really difficult time about paying for the Xifaxan so I had to try the Lactulose first, I only used it for one day & questioned it to my heptologist. Im supposed to start back on the Xifaxan as soon as it can get filled. I've been told & have received a letter in the mail saying it is covered but for some reason I am still having issues getting it filled. I hope this is helpful for someone.

Stay strong❣️

Shannon

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Here is a government document explaining urso does causes weight gain......

ncbi.nlm.nih.gov/pubmed/128...

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here are two PBC foundation posts where PBCers complain of weight gain....

healthunlocked.com/pbc-foun...

healthunlocked.com/pbc-foun...

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It does I stopped taking it. It is not a wonder.cure for everyone. Poor care and support for PBC in Detroit MI. Poor pain management they basically do not give a damn

Beaumont hospital royal oak shod be reported for mismanagement of palliative care funds. They do not answer the phone recorder on during business hours and refuse to help abandoned patients. Carerfusers is what they are. Mean arrogant and callous. They are using federal funds meant for.patients luncheons and self congratulating events. When do they help those in need?

.

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here are 3 out of 50 articles or posts on joint aches associated with PBC...this way i can substantiate what i posted earlier since you did mention i may be misleading her ...I beleive you may be a veteran at PBC but you do not know how PBC effects everyone...

healthunlocked.com/pbc-foun...

mayoclinic.org/drugs-supple...

ncbi.nlm.nih.gov/pubmedheal...

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here is an articled on brain fog written by a Doctor who is a specialist in autoimmune diseases he claims inflammation is at the root.

bodyecology.com/articles/4-...

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Thank you, I will check this out & send it to my heptologist. We could both be onto something here lol. Possibly the toxins cause the inflammation? But it's hard for me to fathom the thought of our brains swelling & us not being placed in a medically induced coma to get the swelling down??? That's how brain swelling is dealt with in the states. I could be taking this way over the top too. I'll send the article to my hep Dr then post his reply. But, that won't be until Monday of course.

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you are welcome.

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I have pbc and fibromyalgia. The only way i have been able to explain the pain is "it's like when you have the flu so bad that everything hurts." Most people have had the flu so they understand it better that way

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Are you on meds for it? Because I haven't been prescribed anything for the constant body.

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