Bio bank Royal Free

[Hastingsgal]

Hi everyone,

After months of terrible symptoms inc chronic fatigue, pruritus, sicca -severe dry Eye disease etc, I tested significantly positive for AMA recently. (Though I understand a positive is a positive no matter how high, mine has increased from 80 5 years ago to 360 now)

It has been a complete nightmare getting anywhere locally On NHS. I asked to be referred to London Uclh rheumatology & demanded a retest on AMA. This is how I found out it had quadrupled. After a very long wait & many mix ups was referred to Royal Free hep.

I was seen on Monday and they were brilliant despite being super overstretched. My liver scans all normal. But they asked if I would donate bloods for bio bank since a significant number of people with normal liver do end up with full blown PBC. It's a wait & see now.

Is anyone else in this situation? My bloods are normal. I've had abnormal lfts in past once.

Another question, I seemed to be getting better and then wham! I'm in relapse again. They are fairly certain I have Sjogren's & my symptoms match both PBC & Ss. Does anyone get waves of being better & then bam out of nowhere unwell with pruritus, chronic fatigue, debilitating dry eyes, pin & needles/pain in forearms/hands & legs, etc etc all at once?.

I was not drinking for a long time and started up again within reason, not sure if that has anything to do with it...and I'm slightly an imposter as I have not been diagnosed yet!

I'm mainly wanting to know if anyone is in the same situation being a bio bank blood contributor and in a wait & see situation.

Thank you! Hastings gal.

[lorilee58]

Oh my goodness I have not been diagnose as of yet, I see a specialist on Oct 16th. My numbers are gradually going up, my scan showed no cirrhosis. However I get the itching, burning, fatigue, dry eyes, pin & needles/pain in forearms/hands & legs. Then I have days where I think it is all in my head I do not have it any symptoms. Very frustrating to say the least. I feel as though I am going out of my head, this week has been a bad week with the pain, itching, burning and dry eyes. Tired so so Tired!!

[Hastingsgal in reply to lorilee58]

It's all so complicated. Autoimmune conditions are a mindfield. So many symptoms similar in many. I used to think it was in my head, but now I know something is seriously wrong. Eyes so bad they put punctual plugs in. Scans of salivary glands show cellular changes.

[butterflyEi]

Hello Hastingsgal

I was diagnosed in 2006 but almost certainly had PBC up to 10 years prior to diagnosis. I was pretty good until 2014 when the itch I could cope with went mad (now controlled with meds) and every now and then I will be very tired and just not be able to do anything or just sit down and go straight to sleep as you say it comes in waves. I have dry eyes but do not have an Ss diagnosis.

The reason for my long preamble is to get to the matter of pins and needles etc. For a long while I wrongly assumed that the pins and needles I suffered was due to the PBC. Recently the hepatologist told me to speak to the GP and I have since been prescribed gabapentine which seems to have had a beneficial effect on the pins and needles and although I have only been on it a couple of weeks the pins and needles have diminished. Apparently pins and needles (peripheral neuropathy) is very common maybe worth chatting to your GP.

Many do not drink but PBC is not a drink related liver disorder but an auto immune disease. My hepatologist said that it was okay to drink in moderation and within the UK guidelines. I barely drink but if it is a celebration then I enjoy a glass of wine. Alcohol of course is something that the liver would have to process and therefore it is not good to stress the liver.

hope some of this helps, let us know how you get on.

best wishes

[Hastingsgal in reply to butterflyEi]

Thank you. I will look into your suggestion of drug. They actually operated on one arm saying I had carpel tunnel syndrome. They were due to do the other arm 2 weeks later but I backed out. The operation made things worse. I didn't realise it was connected to my inflammation, which is connected to my illness. When I get a flare up, so does the pins & needles. Thank you!

[Michiganpbc]

I have PBC and Sjogrens and have had mostly only slightly elevated labs when diagnosed. I was told you can have flares of being really ill to feeling pretty healthy and that's true for me.

[Hastingsgal in reply to Michiganpbc]

Thank you for replying. That's useful to know.

[Michiganpbc in reply to Hastingsgal]

It does help to hear others with similar symptoms, I use to think I was crazy until I researched all my symptoms and saw they are very common for my diseases.