newly diagnosed

[Anitaray]

I am 55 years old and I was diagnosed this past December with PBC. initially I was shocked. I had never heard of this disease and all its complications and how it can affect everyone differently. I am a diabetic as well. I was told that I have micro albumin in my urine and that this may indicate onset of kidney disease. My A1C is 7.0 and I also have Hypothyroidism. My question is: does anyone else with PBC have kidney disease and is this common?

[June9961]

Hi Anitaray,

I think we were all a little shocked when we were first diagnosed, I know I was even though my little sis had the disease and had gone through a transplant. My last three blood tests showed that I have early kidney disease too. I don’t know if it is because of the 18 years of urso I have been taking or if it is because of the PBC. I am waiting to see if it has progressed.

[iagra]

I have PBC and some of my kidney labs are out of normal range. Going to see a specialist in February. Will know more then. I also have hypothyroidism.

Be well!

[Anitaray in reply to iagra]

Hope all goes well for you

[butterflyEi]

Hi and welcome to the group. I have a range of other autoimmune diseases but none of those that you have. Have you joined the PBC Foundation, free to join, has lots of useful information and back copies of the Bear Facts magazine have some interesting articles. Also have a look at the pinned posts PBC and Life expectancy is a positive read.

I hope you are being well looked after by your doctors and I am guessing as a diabetic you are well sorted with your diet.

best wishes

[Anitaray]

Thanks I will look it up

[Hidden]

Yes, and I believe it is a symptom of PBC rather than effect of URSO. There are meds that cause hair to fall - it seems that there's an anti-depressant that does but can't remember what it's called!

[Hidden]

Apologies Anitaray for not mentioning how good it is you have joined the group. I hope that you find it as helpful as I do. I have Sjogren's, pernicious anaemia, periferal neuropathy, lichen planus, (and a little dog) so it's not all bad at all. The dog helps me exercise when I don't feel like it. Luckily she doesn't moult but I certainly do. Please keep us informed how you are doing?

Best wishes

[Anitaray in reply to Hidden]

Thank you..... what is lichen plantus, if you don't mind me asking

[Hidden in reply to Anitaray]

Lichen Planus is an autoimmune condition that affects (in me) oral mucosa, linings of my cheeks, tongue etc. I was diagnosed over 38 years ago. It was extremely painful with any movement or touch of the ulcerated parts so talking and eating were real agony. I had topical steroid treatment. It is incurable like the other AI conditions. It can affect hair, nails, skin. Since I was treated for colon cancer with surgery, chemotherapy and radiotherapy, and treated with urso for PBC, the lichen planus has hardly been a problem. It's still there, I can see two patches of it, but it's never very painful now. I don't know why it started (oral surgeon said at diagnosis that he saw it mostly in people who were very stressed, and I was) and I don't know why it has calmed down. I also had erosive patches on some finger tips of both hands which felt as bad as the worst mouth ulcers. I haven't had these for a few months. I haven't had an overview of the situation from a specialist but my own thoughts are that the general level of inflammation in my body is getting less. And I am far less stressed. It isn't easy to avoid the things that stress us, is it, but finding ways to mind less about these things is the best way we have of helping ouselves it seems to me. I hope you are finding ways that lessen your anxieties and that this forum is as good for you as it is for me. Keep us informed!