PCB/AIH for 20 years but urine now turned browm

[Sandpiperx]

Hi

I have lived with this condition for almost 20 years and been on Urso and Azathioprine medication for most of this time. Bezalip added about 5 years ago. I have always considered myself really lucky as l have no real symptoms that others complain of.

The past few days l have noticed that l am not urinating as much as normal and my urine is dark brown. I have no pain but have been feeling slightly off balance. Does this signify a sudden deterioration in the liver? I don’t see my consultant until February and unsure about GP appointment leading up to Christmas.

To make matters worse l am moving house on 26 th January. I was looking forward to this and all my plans but at 69 and widowed it may not be the best move if my health is possibly going to get worse.

Has anyone had these symptoms and managed to recover.

Thanks

SandpiperX

[Flid]

have you called a liver nurse to ask advice? That would probably be a good step if you have a new symptom which can’t be explained by change of habit. Assume you are drinking the same and have not changed diet or anything?

[Sandpiperx in reply to Flid]

Hi, Thanks for your response. Think l have calmed down and thought it through. Probably not drinking enough water due to other things going on.

[zinchunter in reply to Sandpiperx]

Agree. Water is amazing!

[butterflyEi]

Hi Sandpiperx

It seems like you are going through a stressful time what with your loss and the potential move. If you are busy packing up and sorting things out I wonder if you are drinking the normal amount of water during the day if yes I wonder if it could be a UTI. I recently sent away for a home testing kit (through Amazon) I had no real symptoms other than urgent need to dash to the loo. I proved positive, I filled out the surgery on line form and the doctor called the same day, asked some questions and gave me a prescription for antibiotics after a week I am back to normal.

I think I would go for a process of elimination through the GP as the first course of action. Does your surgery have an online system? If not it may be helpful to call one of the helplines available such as the PBC Foundation or the British Liver Trust.

wishing you well, let us know how you get on.

[Sandpiperx in reply to butterflyEi]

Thanks for your reply. Think l panicked when he was two days running! I think maybe you have hit the nail on the head. Need to slow down and make sure l am drinking enough water. I have had visitors staying over to add to the mayhem and l am paying more attention to them than myself. Going to take a step back! Have a lovely Christmas!

[butterflyEi in reply to Sandpiperx]

Enjoy your Christmas Sandpiperx and a Happy New Year.

[234WARD03]

Sounds like a UTI urinary tract infection and you need antibiotics. You must see doctor. Probably nothing to do with PBC. Also drink lots of water to help.

[Sandpiperx in reply to 234WARD03]

Thanks for your response. I have been neglecting myself due to stress of everything. I will take your advice.

[Wocket]

I would ask your doctor to check your kidneys because Bezalip can cause kidney problems. I t probably is what you said in that you hadn’t drank enough but I suffered kidney problems after being on them for 3 years.

[Gardengrl]

Hi- lately I’ve been reading up on what to expect with liver failure since unfortunately I have hit a wall with treatment failure for the Autoimmune Hepatitis part of my overlapping disease with PBC. I was put on Tacrolimus when my liver stopped responding to prednisone after 20 years annd now Tacrolimus causing too many skin- precancers so I’m off of it. URSODIOL has helped, no issue on the PBC but in overlap it’s all connected. Anyway, dark urine can be a sign of liver & kidney problems as well as other conditions like hemolytic anemia. I encourage you not to self-diagnose by trying to see if extra hydration helps, as if you are that dehydrated something else may be wrong. Just know that labs can generally give an idea as to the problem but waiting to see the doctor can be very serious. I have many overlapping autoimmune diseases including Sjogrens and my whole body is always dehydrated, have to take salt pills and electrolytes. But suffice it to say I have had major dehydration issues and never brown urine. Not to be overly reactive but really encourage you to call them and follow it up with a visit and labs. Better to be safe… blessings to you and yours.❤️