Hi, I’m curious to know if anyone else has experienced less pruritus as jaundice, and LFTs increase? Itch was always my number one issue, waking me up multiple times a night for years. it’s what led to my diagnosis in 1999.
Now, I’m jaundice all the time and daily pain is quite significant, however the itch (except for the odd evening) is not near what it was. I’m quite relieved to not have it, but watching myself turn deeper shades of yellow and shed lbs and hair and be too weak and dizzy to play with my kids, I’m wondering if there’s a connection, ie. partial blockage vs. full etc.? has anyone else experienced this? Or have reference to research in this area? ,
Thanks,
I don't know but I think even the cause of itching is not fully understood yet.
Thanks for your reply
Jules,
I know my repy is late but I got way behind after transplant in reading these discussions. I think you may have something there though. I do believe the higher my numbers got that the itching was less. I was so afraid of the terrible itching coming back though that I would not stop taking my Rifampin every day. Early on when I first starting having terrible itching, I was taking two a day and tried to cut back to one a day to save money. Then I tried skipping a day. Well I tell you what my body let me know real quick that it didn't like that and the itching came back with a vengeance. So after that I stayed on it religiously till the day of my transplant. Good observation though that I had not considered.
Mark
PSC 2011 / Liver Transplant 7-2015
My itching seems has nothing to do with the stage of my disease. But it has always been limited to the back of my feet, and mostly at night (weird?). It was there whether my bilirubin is 3 or 21. One of my observation is that itching has lots to do with the stress. When I feel stressed, I can have itching started within seconds.
DHZ,
Well as the bilirubin climbs and the bile ducts become clogged you are getting bile salts under your skin. This is causing the itching. When the bile is flowing properly there is not the back up of bile salts under the skin. Seems pretty logical to me and this is what my hepatologist told me as well.
Mark
PSC 2011 / Liver Transplant 2015
I agree that your theory is reasonable. If it's correct, one would expect worsening of itching with the progress of the disease, at least the bilirubin level. That's obviously not true in my case. At least several PSC patients I know do not fit in that theory too. I started to have sporadic itching when my bilirubin started to climb and stay at around 2-3 level. But it did not go much worse even my bilirubin shot to 21 later. Now my bilirubin is in a range between 9 to 15 but I don't feel big change of the itching. In my case, itching is never a major issue. Even when some day I had really bad itching, it only bothers me for a few hours total. It's never a constant symptom. I had this disease for about 9 yrs now. Rarely I woke up midnight because of severe itching, only several time last year (single digit). And it only happened once a while. But I do know it's common for some people.
I can't explain to you why. I just don't know. I asked my doctor and he couldn't explain either. Maybe I just can tolerate many annoying symptoms so well that I don't complain that much. I know there are several theories about itching, which, IMO, suggests that we really don't know. My guess is that PSC might not be a single disease. That's why you see some people respond to Urso while others don't. Some progressed so fast while others just stopped even they didn't do anything. That's why any study shows 100% positive results will make me skeptic. So your theory might be correct for some patients, but not all of them.
fcmmark said:
DHZ,
Well as the bilirubin climbs and the bile ducts become clogged you are getting bile salts under your skin. This is causing the itching. When the bile is flowing properly there is not the back up of bile salts under the skin. Seems pretty logical to me and this is what my hepatologist told me as well.
Mark
PSC 2011 / Liver Transplant 2015
I did a little research on this subject at PubMed. Here is what I got:
Generally there is no definite correlation between the severity of itching and the stage of the disease. Some people show it while others don't. The exact mechanisms of itching in PSC is still unknown. People have considered bile salts, histamine, serotonin, progesterone metabolites and endogenous opioids as the possible cause, but research can never confirm any of them. Particularly, it is never established that there is a correlation between the level of these chemicals and the severity of itching, which indicating none of them is the major factor. Recent theory is on lysophosphatidic acid, whose production can be blocked by rifampicin. That drug worked in quite a lot of patients, but still not all of them.