Male with Pbc question.

[ryantsan]

Hello

In the process of investigating neuropathy and pain in my arms and legs I t was discovered last year that I have elevated M2 antibodies. A liver biopsy was performed and I was told I do not have PBC.

I continue to have a lot of burning tingling and cramping all over (primarily arms and legs ) Sometime I wonder if the prickling isn't itching? My question is this, for those with clearly defined PBC is any of itching younexpeeince associated with pain? Cramping? Burning ? Also, is anyone male and experiencing this combo ?

I am wondering if I shouldn't pursue the PBC diagnosis again or with a different gastro

Thanks

Ryan

[Hidden]

Hello ryantsan.

I started itching intensely early 2010, diagnosed with PBC December 2010 and not via a biopsy as I had symptons and bloodwork plus a high titre of antibodies (AMAs) that gave diagnosis. A biopsy tends to be a definitive for diagnosis of PBC due to changes throughout the liver cells.

Since diagnosis and starting urso the itch has altered over time but I still have it late at night and throughout until around 6a.m.

The only way I can describe how the itch is that I feel as if I'm being attacked by wasps or rolling in nettles, those sensations. I have no pain prior to the itch, never have nor burning. I feel prickles often during the day behind my knees and elbow, places where the joints bend that is.

I cannot say for certain if you do or do not have PBC but usually a biopsy does give the diagnosis.

There are various other liver conditions that tend to have the same symptons though not everyone experiences the same symptons (some never itch with PBC for eg) and in my case when I presented to my GP (I am in the UK) with itching he took blood for liver function test and found those to be higher than normal range. It was discovered via blood test later in 2010 that I had a high titre (measure) of the AMAs. As I understand it a patient has to have over a certain measure to be diagnosed without biopsy as usually if any doubt as to whether PBC is present (or perhaps other liver disorders) one of these would be performed.

[ryantsan in reply to Hidden]

Thank you. I have read thousands of online posts over the last two years of declining health. This is the first time I have ever posted. Thanks for the reply from across the pond.

[butterflyEi]

Hi ryantsan

I am female and an itcher. Before medication to help with the so called itch of PBC it could sometimes feel like a sword fight was going on in the lower tissue. Also I would get burning and pickling. Even with medication I still have pickling and burning but at a tolerable level. It is more unusual for PBC in men but it does happen. There is something called PSC which effects men more so than women that also has an "itch". Anything to do with the liver may be itch related. Perhaps a second opinion might give you a different perspective or a chat with the helpline of the PBC Foundation might set you in the right dIreton.

Best wishes

[GrittyReads]

It might be worth having all vitamin and mineral levels checked, as this sounds more like symptoms of B12 (I think??) deficiency, or maybe a thyroid issue.

Also, I know it is different for you if you are in the States, but in the UK I would always hope to be seen by a hepatologist, rather than a gastro, and preferably one who knows about PBC.

However, AMAs alone are not sufficient for a diagnosis of PBC. I've probably had AMAs all my live, and no PBC yet, but have had annual tests since AMAs first noted in1992, and still fit.

Hope this helps and that you get some answers soon.

[DonnaBoll Administrator]

maybe for peace of mind have your liver function tests done at regular intervals ( every 3-6 months) just to monitor. I believe you said you have a positive AMA. The presence of elevated liver enyzmes and a + AMA are usually enough for a dx of PBC. Even in very early stages, Urso should be started. Maybe see a hepatologist if possible - even your GP can order the liver enzymes though for now. If elevated though, you need to see a doctor who can prescribe Urso while you continue to monitor the lab results.