Hi i was just diagnose with pbc trough blood work.
Was wondering anybody with pbc have muscle twitching and bone pain also shooting pain in your body, i have that. Please help, also my docter says all my liver function blood test are normal, only slightly elevated billirubin and the positive AMa. He said hes not sure why everything is normal when other test shoukd be higher too
Hello luisv187.
You can have normal LFTs (liver function tests) with PBC but still have it. Bilirubin as I have found can actually be slightly abnormal due to other causes and not just PBC so it might just be that but that would be for your doctor to determine.
Positive AMAs are usually a diagnosis for PBC if you have other criteria (abnormal LFTs and also abnormal GGT (a blood test taken in liver disorders) plus any symptons you are encountering. I was diagnoses with the itching I started with, fatigued at the time and abnormal LFTs and my GGT was found to be abnormal. I had what was described in a measure of AMAs as 'a high titre' that gave diagnosis back in Dec 2010 when I was 46.
I think from my own experience of being informed I had PBC and then starting on the urso Dec 2010 that things can show a better picture up of the PBC as the LFTs ultimately can alter for the better in majority of cases. (I had a good drop in the very early days of urso and then it tapered off but they are still going down slowly over time.) The bilirubin is one of the LFT checks so you might see a difference with urso. Same with the GGT.
You can have bone pain with PBC. Not sure if you have but have you had your vitamin D levels checked? This is required for good bone health. Mine was just under the normal level back in 2011 but the hospital consultant (I am in the UK) said it was 'not bad' and didn't at the time recommend any supplements. He asked me about sunbathing etc which I didn't really do and had been working for some years indoors when the sun was at its best around noon. I started utilising the sun and my next check the vitamin D levels were pretty good. These days I make the most of even a bti of winter sunshine, I dawdle when walking out just to absorb a bit!
Can't say about muscle twitching. I know as we get older we can start to lose muscle mass due to ageing. I try and do a lot of walking when I can to keep my muscles going strong.
Hi my vitamin d was check by neuro due to my twitchin and it was at a 14 im 27 year old male and always in the sun so why would it go so.low
Hello again luisv187.
Well with PBC we can have a bit of a problem with absorption of the fat-soluble vitamins like Vitamin D as well as A and K. This is why we can become low at times.
By the addition of ursodeoxycholic acid with PBC we are adding bile to our digestive system and that in turn aids better break down of fats and it is said to improve the flow of bile, this is how it is thought to attempt to slow down progression of PBC.
I think in my case my levels went back up during 2011 after it was said I was 'a bit low' by the hospital consultant just after diagnosis possibly due to having PBC that I didn't start the treatment of urso with until Dec 2010.
I think it depends where you are regarding sunshine. I am in the UK and in the North West where we don't have as much sun as down South but I know since 2011 I have made use of any sunshine even if it just sitting outside for half an hour at lunchtime. It is said that persons in the UK are likely to have a slightly lower level of Vitamin D during the winter months as normal but I think it depends on maybe how much we have in our system stores to get us by the colder months.
Hi welcome to the site thankfully it's only lately that I have taken bone pain and have had Pbc for 14yrs diagnosed 1 3yrs ago. Contact the Pbc foundation link top of page they have a wealth of info and give great support to us with PBC. Re bilirubin could b other things Putin it up perhaps gall stones one maybe blocking a bile duct. R inflamed pancreas he r she needs to do further investigations. Best of luck.
Thank you.
So bpc does not elevate billirubin?
You can have rising bilirubin in PBC. It can be used for a marker. But there can be other explanations as well and that is probably one to quiz your doctor about.
I know certain medications can raise LFTs and I am not sure if one of those is bilirubin but if that is the case the doctor would be aware of it and take that into account.
Yes it may but should be helped a lot with Ursodiol.
Yes the Pbc cause ur bilirubin to rise but in my case anyway this happened in conjunction with the other Lfts rising too and this still remains the case for me. I feel you should see your Hepatologist they are the best people to talk to re symptoms you are experiencing and can order appropriate tests for you.
Hi I suffer from all the symptoms you mention, mostly at night which stops me from sleeping. I have been on Urso since my diagnoses and my LFT is now normal due to the medication. This does not, however, help the fatigue, pain etc. Just because the LFT returns to normal doesn't mean you no longer have PBC.
Hi @peridot, thanks for the response, my docters did not prescribed me urso or anything, he said i didnt neef anything and i was a bit skeptical bout it,
Hi I have pbc with slightly raised ggt but my 30 year old son has another auto immune liver condition called Gilbert's syndrome(harmless thank goodness) but the main symptom is raised bilarubin.may be worth a look?
Twitching does happen with liver disease and does not signify more than that. If you have bone pain, a bone density may be helpful if you have not had one.
Hi,so do you have twitching too,
My docter did not prescribed me anything, he said nothing you cam take or help pbc
Treatment with Ursodiol has helped the twitching a lot. You might want to check ou Mayo clinic.org (or) .com. It is a good website as is pbc foundation. It seems tome that Ursodiol should be recommended with everyone treated with pbc.
Muscle twitching is a common issue with any liver problem. With bone pain, wonder if you have been checked for osteoporosis.
Oh i got.my vitamin d and it was at 14 so today i have to do a scan for . osteoporosis
Hi Luisv187,
I saw this post from a couple of years ago and wondered if the twitching ever resolved? I have been taking urso now for 2 weeks and have twitching all over, but mostly in my face hands and legs. The twitching, however, started months before taking Urso.
Anyway, I am interested to hear your story
Thanks
Alison
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