I was diagnosed with PBC in December 2016. My liver biopsy staged me at a 2. I started URSO early January of this year. I had horrible itching (how I got the ball rolling on my diagnosis). I think URSO added to it. My doctor started me on Prevalite and within a week my itching had gotten better...not great but better.
Now my question is...have any of you experienced darkening of your skin all over your body? I believe it's call hyperpigmentation. I am definitely experiencing it. Will I always have it or will it fade if we get my liver enzymes down? I am also taking medication for hypertension and read that it could cause hyperpigmentation. So I don't know what to think.
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marty102
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I started itching intensely early 2010 and that is how I was diagnosed with PBC December 2010. I started on urso and it took a few months for a few initial side-effects (hearburn, a bit of tummy bloating and I thought the itching was worse) to start to settle down.
I used to find I itched a lot at the backs of my knees, moreso when I was bending down. I did see in the early days that the area looked bronzed but I no longer see that. However I do find that in the warmer months now (I am in the UK so sunshine can lack and I live North West so we get less than certain parts of the UK), doesn't take much for my skin to tan. It takes even longer to fade and as I am posting on here, I did utilise the sun during the summer last year (holidayed warmer part of UK) but my arms and face have lessened in tan than they originally were. I have to say I've never had a fair skin (hazel eyes and mid-brown hair) and always gone brown as opposed to red with the sun when I was out in it (never used to bother until I got diagnosed with PBC and Vitamin D was mentioned, a vitamin we can lack due to having PBC and we need sunshine to make it).
My blood tests are still not normal, not overly-higher but they've never been normal since taking the urso just gone 6yrs ago. Not expected to although some with PBC do get back a normal result. Suppose it can depend on how early we are with PBC when we are diagnosed. I have never had a biopsy as in the UK if you are showing symptons (back in 2010 I had itching and at the time fatigue) plus the relevant blood tests then you don't have one.
I have no desire to find out what stage I am supposed to have. (I am nearly 53 by the way.) I am confident that a scan can show. Also I do think that a biopsy can be a bit misleading but this is my way of thinking. The liver being a large organ, although PBC can be diagnosed, I do think that there could be discrepancy with the staging. A biopsy doesn't change any treatment of PBC if already diagnosed anyway.
Obviously if you are taking another medication (I've only got the urso, had nothing else since diagnosis) then I can't say especially if you state that it can cause certain skin changes.
Hi Marty I am fair skinned with freckles but I notice that I now tan and retain it for many months which is unusual for me. One of the better effects of PBC for me ! Best wishes
Hi marty102, I was diagnosed about 2 years ago,thought to have had it for about 6 years. I have very few symptoms,but have several large freckle type marks that weren't there before. Also I get a much darker 'suntan' when I've been in the sun, that lasts for 7/8 months. I'm not on any medication for pbc but have meds following a heart attack.
Yes, I have liver spots on my arms and face. I'm doing better now not itching since I have eliminated processed foods from my diet. No hot dogs or anything with preservatives or chemical type ingredients which are toxins that the liver has to get rid of and can't and they back up into the blood causing itching. I stopped taking urso because it was causing me to gain weight and I don't want to take any drugs for the itching which are hard on the liver. My liver enzymes returned to normal and I'm taking Enbrel for AS which I'm hoping also that it staves off PBC.
Yes, I was controlling the itch by going in the sun so I wasn't itchy at the time of having a hot dog and the next day I itched. I was worried since winter was coming and there's hardly any sun. I do a lot of researching and read how the liver gets rid of toxins by combining them with bile and eliminating them through the bowels. With PBC, since the biliary ducts are scarred and constricted, the bile can't get through and backs up into the bloodstream which then causes the itching in the skin. A few days ago I had a meal over someone's house which consisted of Lipton's rice and broccoli along with pork chops and bar-b-que sauce and my feet were itching by night time. Not sure if smoke flavoring in the sauce or the other chemical stuff in the rice or maybe both. I just know to be itch free I have to avoid processed foods. Now with people that are more advanced, they may still itch because of high level of bilirubin. With newborns that have high levels of bilirubin, the treatment is to go under UV lighting or sunlight which breaks down the bilirubin. Be diligent in watching what you eat and see if this works for you. I keep telling everybody "I'm itch free, I'm itch free!" after 3 years of itching. I hope this works for you because the anti itch drugs have side effects and are hard on the liver. Let me know how this works for you.
Thank you so much for your comment! It gives me hope Have you been staged? I'm at a 2 (or so they say) but I'm will to try anything to see if it helps.
Is coffee creamer considered processed? Cheese? Milk?...do you use a website or do you have strategy you use for foods? I'm very interested in this! 😁
I had a liver biopsy done but was never told what stage I am, but I would guess at stage 1. I just recently found a brand of half and half and heavy whipping cream that doesn't contain any additives like carrageenan, etc. I like to make my own ice cream without that stuff that makes it sticky and yucky. Also, my own ice cream doesn't have high fructose corn syrup (HFCS) in it. I drink a ton of whole milk which only has vitamin D added to it. Not sure where you are from, but I live in Pennsylvania in the US. Here we have the red and white real seal on products of cheese to distinguish between processed cheese foods made with soy etc. I also make my own soda. If you don't have a soda machine you can buy seltzer, just carbonated water with no sodium benzoate preservative and add flavor like lemon or lime along with Equal sweetner for diet, or sugar for non diet and it will not contain HFCS. You can buy flavor extracts like root beer, vanilla, orange, etc. I know it takes longer, but read your food labels in the store. Once you get accustomed to buying the right foods, shopping will go quicker. Nothing like making homemade chicken or beef soup with fresh vegetables and meats as opposed to eating out of a can. I just learn by trial and error and I do a lot of research on the internet. I hope this helps you out.
Thank you soooo much!! You are a wealth of information! I wish we could add people so we can find them later. I hope you don't mind but I may pick your brain once in awhile?
I, too, am from the states...sunny Corpus Christi to be exact. We're sunny and 91 degrees today!
I think I've seen the REAL seal on packages...I'll check.
Thanks again! You have given me something to look into...I sure hope it works for me. If nothing else it's healthier.
I have sisters that live in Texas. Right now it is 41 degrees here but tomorrow we'll be getting 6 to 10 inches of snow. You can follow me on this site.
I have always been a freckled and speckled person but just before I was diagnosed with PBC I noticed larger patches of hyperpigmentation on my face, arms, legs, and hands. These really looked like what my mother always called 'liver spots' but my dermatologist said they were sun damage and I could have them lasered off (for a price ) I've been on the URSO for about 6 months and I do think the largest sections of darker skin have lightened, but then it's winter here. Seems the spots have no relationships with my liver functions since they were actually darker when my bilirubin was lower than it is now.
At this point, I'm happy to have better liver function and somewhat less itching.
Hope you find this helpful. Take good care and please keep us posted on how you're doing.
Funny most here comment on dark spots. I don't have dark spots...my whole body is darker...most noticeable is my covered areas as they now match the rest of my brown body. I've only been on URSO about 6-7 weeks and it might be lightening. I guess time will tell.
That sounds like the typical hyperpigmentation (all over) that is listed as one of the symptoms of PBC. Hope the URSO works to lessen it. I'm definitely spotty/freckley, not dark all over which is why my dermatologist said it wasn't related to the PBC.
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) I've been on the URSO for about 6 months and I do think the largest sections of darker skin have lightened, but then it's winter here. Seems the spots have no relationships with my liver functions since they were actually darker when my bilirubin was lower than it is now. 
To take or not to take Urso!!!!
Itchy skin
Second hepatology appointment
side effects from Urso
