I was diagnosed with PSC in 1993. Other than the temporary placement of a stent in my common bile duct in 1998 to open it up, my condition has been stable until recently. For the first time ever, I had a slight increase in my AST (58) and ALT (60) in a recent blood test. My doctor said not to worry about those. My Bilirubin and Creatinine remain normal. Also, I started to experience itching about five months ago---generalized throughout my body, but with one spot on my upper left back that has intensive itching with pins and needles like pain.
According to my liver specialist, one can have a spot on one's body where you have intensive itching with pain which is attributable to PSC even though the Bilirubin and Creatinine are normal. He called this hypersensitivity. He also said the AST and ALT increases did not cause the itching.
Does this sound right? Did I understand him correctly?
What is the underlying mechanism that causes the itching? I thought the presence of uric acid was the culprit.
Cholestyram has been ordered for me which I will take as soon as I get it from my mail order house.
It sounds like your path is a bit like mine. I too had the common bile duct opened in 1998 and I'm stable too. For me, the ALT has varied from a low of 23 to a high of 201. I have had since 2003 a low of 38 to a high of 67. I don't have recent AST numbers because they stopped taking that test for me after about 2001. But before that the numbers ranged from 37 to 215. Did they tell you your Alkaline Phosphatase?
And I too was told that the uric acid was the culprit. Did they tell you that number?
I tried the cholesyramine but I didn't like it. It didn't do much and I could only handle it in orange juice. But twice a day of orange juice is actually a lot of calories. And I didn't like the taste of it. Maybe you'll fare better with it than I.
Thanks for responding to my post. My Alkaline Phosphatase is normal. Would the uric acid number be the same as Blood Urea Nitrogen? If so, that was normal also. Do you find that your itching gets worse when your ALT is high?
I just started taking the cholestyramine today so I will see what happens. I found that it clumped in the cold orange juice instead of fully going into solution. Should I be concerned about that?
My doctor says that if the itching gets better after taking this medicine, it means that the itching was from the PSC.
Do you find that the itching is worse at certain places on your body? Do you have pain with it?
I am indeed thankful that I have remained stable. My liver doctor says that of his patients I am one of about five whose condition hasn't deteriorated.
I don't think I'd worry about a little clumping of the powder.You can try it in apple sauce.
My itching is worse on my legs, feet, and hands. But I said in another post, castor oil has helped a lot. You can feel the effect of the oil even the next day, as it lingers on the skin. I think you should try that on your back.
I don't think the numbers have much to do with the itchiness. For me, nerves in general, lack of sleep, and point in my cycle make more of a difference. Some of it is psychological too. It's hard not to worry about your future with PSC.
Cholestrymine doesn't dissolve in liquid so you have to drink it in suspension. I have a small bottle that I mix my OJ and Cholestrymine in and then shake it up before drinking it down. It has helped me at least somewhat...
Severe itching for me correlates with increases in my Total Bilirubin. I m having strong symptoms now with BR of about 3. I itch intenselyaround feet ankles and legs and stomach and back. I take a scrip hydroxide HCL 25 mg to reduce this and have mixed reactions to its success.
Thanks for the suggestion of castor oil. I will give it a try. I find Eurcerin lotion much more helpful than Aveeno. I sometimes think the Aveeno makes the itching worse. Dakota
Lara said:
I don't think I'd worry about a little clumping of the powder.You can try it in apple sauce.
My itching is worse on my legs, feet, and hands. But I said in another post, castor oil has helped a lot. You can feel the effect of the oil even the next day, as it lingers on the skin. I think you should try that on your back.
I don't think the numbers have much to do with the itchiness. For me, nerves in general, lack of sleep, and point in my cycle make more of a difference. Some of it is psychological too. It's hard not to worry about your future with PSC.
Cholestrymine doesn't dissolve in liquid so you have to drink it in suspension. I have a small bottle that I mix my OJ and Cholestrymine in and then shake it up before drinking it down. It has helped me at least somewhat...
-----I found it really difficult to find ways to take the Cholestryamine. I tried OJ, applesauce and oatmeal. I find the taste and texture quite objectionable. Also it caused me abdominal discomfort, bloating and weight gain so I stopped taking it for a couple of days. However, I found the itching returned. I also take Fexafenadine (Allegra) and Hydroxyzine, but they don't completely stop the itching so I am back with the Cholestryamine. I am using smaller amounts of liquid or food in mixing it. This helps to get it down quickly. I guess this also confirms that the itching is from the PSC, and not something else. Dakota
So recent understanding of the itch associated with cholistasis, regardless of the cause has been unclear. As you mentioned the original theory depended heavily on the belief that the bile it’s self was being deposited in the skin and caused the tingling and itching you are feeling. Further testing using patient plasma in monkey brain circulation showed in increase in the monkey scratching, opioid antagonists (blockers) like naltrexone has been shown to improve symptoms this has proved that the etiology of the itch is more convoluted. On a personal note I have found relief only with cholesterol binding resins like cholestramine. I have a scrip of nailtrexone I plan to try next time I have a bad attack and will update the group.