Basically jaundice and itching are the only main symptoms I have since my diagnosis in 2007. I only had one possible cholangintis a few years ago. I do feel tired all the time but it has been taken care of with enough coffee. Itching is tolerable. But the jaudndice is an issue causing real problems. The number is not very high (between 2-3) but that yellowish color does show up quite obviously sometimes. Since I'm still working, I really don't want my coworkers to see that, at least not now. I did my research. It seems there is no way to lower the number. Any suggestions? Thanks.
What are your liver test values, especially bilirubin?
I have started to use coffee as well (actually, coffee itself was found to have some preventive effect on psc, though not treating…in any case coffee seems surprisingly healthy).
My jaundice has been better the last year or so. Not sure why. I have used vsl#3 probiotic for UC, may or may not have helped.
My bilirubin has stabilized around 2.
I’m curious if vanco will lower bilirubin (and jaundice, as I assume they are related) if only elevated lft is bilirubin.
One post today mentioned that bilirubin (among other lfts) improved with vanco, so that is one option if you can get it. I will try it in the summer.
My total bilirubin is always between 2-3. ALT/AST around 150, ALP number is wild, 200-900. I work indoors so it's not easy to see my yellow. But when dehydrated, it's quite obvious sometimes.
Coffee is a good thing. If I can live long enough, it can prevent Parkinson's disease, dementia, colon cancer, all those worse diseases than PSC. I drink as much as I can if 1) it won't interfere with my sleep; 2) I drink enough water at the same time.
As to Vancomycin, I'm not very sure. I haven't read those papers thoroughly so can't really comment on it. But I always have doubts in miracles.
I feel like I’m talking- that is what my main “issue” is right now too! My number isn’t quite a 2 yet, but that is the first number I look at when I get my labs done every three months! I have even went as far as to go to my eye glasses place to check into rims that have yellow on them and check into a yellow tint lens for when that time comes because I try to hide my illness as much as I can! When the fatigue is really bad, I get very “sassy” (in a fun way) to push myself through it, my closest friends no “those days” and keep the sassy going along with me! Not sure how I will handle it when I can’t hide it anymore…
Hi,
guys, since my diagnosis in 2012.... I have had jaundice in my eyes but its a lot less now.. I rarely ever become itching... and I don't get tired as often but when it comes... I lay it down... My billirubin number I think when I was first diagnose was over 20... very high... now I think its around 4 or 5.. I am lucky today I feel waaaaaaaaaaaaaaaaaaayyyyy better than I did in 2012... I am so grateful that I am doing a lot better . I try not to think about my PSC ... .well it's easy to sometimes forget because you feel back to normal.. I take my Urso 3 times a day .. I had slacked off was taking like 1 a day.. but I got back on it..
Vanco can definitely lower bilirubin. My bili previously hovered around 2-3; gray skin, yellow eyes. Now it is a consistent 0.6. It cleared up the jaundice and also eliminated the itching and fatigue.
Dear Jtb,
It's never about data itself. It's always the interpretation of data.
jtb said:
Vanco can definitely lower bilirubin. My bili previously hovered around 2-3; gray skin, yellow eyes. Now it is a consistent 0.6. It cleared up the jaundice and also eliminated the itching and fatigue.
Ok, DHZ... I know this may sound discouraging but hear me out... lowering billi is the goal, yes, but for my husband, his numbers never changed and it was his mental health that had to improve. This was a huge battle for him. He chose clothes that complimented his skin tone and wore glasses and hats. (Ignorant people who would comment on his appearance would get the death stare from me and an ear full once my husband turned around!) There's tons of great posts on cleaning the body. Acceptance in your skin though is what I have to bring to your post. Keeping you in thought. Take care. God bless.
Well said.. bravo... I was inspired by reading your post.. I still have jaundice tint to my eyes..... but other than that. I feel great.. I don't have low energy.. and I have been saying lately .. dont worry about the jaundice.. it will clear up .. when it clears up .. I enjoy every day.. live in the moment..
Dolphin5 said:
I empathize with you about the yellow skin and eyes and public appearances. My partner feels the same. It is a source of stress at work. Dehydration def plays a big part in the color changes, so keep that in mind. I have nothing else to say on the topic but perhaps to remind yourself that your disease is nothing to be ashamed of. Educating others that you have an autoimmune disease that effects the bile ducts in the liver could be a good thing to get used to talking about. It would also be good for others to understand that a sick liver can be due to other things besides hepatitis , heavy drinking , sharing needles or from a horrible diet.