PBC and skin hyperpigmentation

[Lorelle09]

maybe someone can help me with this. I have positive ANA 1280. Positive AMA M2 120. Positive Anticentromere 160. These were discovered in 2014 when I started having symptoms which turned out to be Lupus. Since the M2 was positive I have been seeing a Liver specialist once a year with annual ultrasounds and LFTs every three months.

In 2021 my LFTs only AST and ALT were raised very slightly. But the following month they would be normal. This went on for over a year. I lost weight changed my diet and for six months they stayed normal. Last August they were raised.

Then normal up until May of this year when they were their highest. AST was 72 s/b under 40. ALT was 128 s/b under 41 and ALP 126 s/b under 129 so normal but borderline a month later they dropped to AST 35, ALT 39 and ALP 99.

However since then my skin pretty much all over has gotten like a really dark tan. I don’t go in the sun at all. This is on my feet, lower legs, arms, hands, even abdomen and back and my face too. Right now I am really fatigued.

I also was diagnosed with cramp fasciculation syndrome I. April due to cramping and fasciculations. Not sure it that adds to it.

Do you think the skin hyperpigmentation means I have developed PBC and my LFTs haven’t caught up with it yet? Do any of you have skin darkening I saw online that it is one of the symptoms of PBC although could mean Addison disease, iron overload or some symptoms of certain cancers as well. Please help if you can.

Shayn

[Lu11]

Hi Lorelle, my Mom had a “tan” due to PBC!

[Readlots in reply to Lu11]

Mine too

[Lorelle09 in reply to Lu11]

I feel like I have that tan look. Took a few months to be really noticeable but now it’s bothersome. I’m pretty sure I have PBC but they won’t say it until my ALP is high. I’ve heard of people being diagnosed with normal LFTs via biopsy. Not sure why my doc won’t just do a biopsy. Puzzled. I have the positive antibodies. The veins on my face. The telangiectasias on my chest. The fluctuating LFTs. The liver pain. The joint and muscle pain. The dry eyes and now the suntan?

[Lu11 in reply to Lorelle09]

my case is similar, normal liver enzymes but positive ANA, AMA M2. They don’t pay attention to this if liver enzymes are normal. I get itchy sometimes and have dry mouth which drives me crazy at times, joint pain (sero negative rheumatoid arthritis). I agree with you, all of those symptoms my Mom had and she did have the PBC tan. Some people/doctors say that lung problems, arthritis are not PBC, I disagree! Maybe not everybody gets these problems but they’re definitely related to PBC in my personal opinion.

[Lorelle09 in reply to Lu11]

Hi Lu11,

So is your doctor just doing a wait and see like mine. Check bloods every three months and only if ALP rises then diagnose you with PBC? Did your mom have the tan all over her entire body? I feel like my tan came on probably started in Jan or Feb of this year on my arms and moved practically everywhere. Just came home from dermatologist she had no idea what PBC was. Also had appt with my PCP he had no idea what the tan was. Guess I just have to wait until I go to UCLA next month for my yearly liver appt. I live in Hawaii and travel once a year to UCLA. I have a gastro here but he’s not a liver specialist.

[Lu11 in reply to Lorelle09]

Hi Lorelei, my enzymes haven’t been out of range (ALP 101 then but not high when we tested for PBC) I had to quit my job because I couldn’t function after surgical menopause which is what triggered all these autoimmune problems. I asked for a PBC test and sure enough it was positive. So I check my enzymes every 6 months. I eat clean and try to exercise as much as I can to keep my autoimmune issues under control. I really believe in being disciplined about eating well, eliminate alcohol and other harmful habits.

Yes, my Mom had an overall tan. It wasn’t because of the sun, it was internal. She was very sick by then and she refused the transplant option.

[Lu11 in reply to Lorelle09]

So in the end we know our bodies better than anybody else so I’m glad you see a liver specialist! If you feel you need more testing, push your doctor for that. That’s the only way I got answers!

[Lorelle09 in reply to Lu11]

Hi Lu

Sorry to keep bugging you but you said your mom only got the tan at the end? I have it now and enzymes are normal. Liver ultrasound normal. Do you think it’s still possible that I have the tan as an early symptom?

[Lorelle09 in reply to Lorelle09]

Also can I ask how long your mom had PBC and did she find out when it was advanced already? How did she find out?

[Lu11 in reply to Lorelle09]

Hi, no worries! I’m happy to chat with you! Well I don’t really know exactly when her skin turned tanned because I’m in California and she was in Virginia Beach so I didn’t see her often. She found out when she was in her early 40s when they did her annual checkup and her blood test showed possible PBC . I remember she had to travel (we were overseas) to get a biopsy which confirmed PBC. She lived a long time without symptoms until things got progressively worse I’d say in her late 50s and 60s. But one thing to consider is the fact that my poor Mom lost 2 sons in tragic circumstances and had a lot of trauma in her life. I really think that stress and trauma play a big role when in autoimmune conditions!

I wouldn’t worry much. Ask for an ultrasound and try not to stress! 💓

makes everything worse.

[Lorelle09 in reply to Lu11]

Thank you Lu11. So sorry about your brothers. Yes trauma does make autoimmune worse. I try not to worry for the most part. I’m grateful for your help and wish you good health and happiness!!

[Michi1]

I had darker spots on my face for years before I was diagnosed. Friends here in Miami thought it was a somewhat common fungal infection but the natural remedies they suggested didn’t help. It may have gotten a bit lighter since I’ve been on Urso for 7 years. I’m not sure. It becomes more pronounced when I get a tan.

Darker pigmentation on cheek.

[TallSurfer72]

Hi! I inquired with two prominent Hepatologists here in the states and was told that it has zero correlation. Something else is causing the hyperpigmentation. You may be deficient in certain vitamins and if you are on HRT, that can cause hyperpigmentation.

Age also plays a huge role in skin and “age spots” developing, also general skin discoloration. Know this from the dermatologist that does my HALO procedures twice a year.

If your skin is jaundiced, it will certainly take on a yellowish hue. What has your liver specialist said?

[Lorelle09 in reply to TallSurfer72]

Have not seen liver specialist yet. My appt is next month. My skin is a dark brownish tan color and it is widespread not age spots. Looks like a widespread tan. My feet are the most noticeable. I am not jaundiced either no yellow tint. I do not take HRT. I eat a clean no salt no sugar vegetarian diet. I take blood tests every three months and all my vitamins are normal. From what I read it could be PBC, certain medications, Addisons disease, or certain cancers. Not sure what is going on. It has been taking on this darkening hue for a few months now.