Tuesday, March 01, 2011

The itchy and scratchy show

Itching and PSC go hand-in-hand. If you have PSC and haven't experienced itching yet, you probably will in the future. I personally consider it one of the worst symptoms because it tends to come and go for years and there is very little you can do to stop it.

As most PSC patients know, the disease involves inflammation of the liver's bile ducts. The ducts are unable to process and breakdown bile, so the bile gets into your bloodstream. The result? Itching (among other things).

Carl experienced itching off and on for at least a decade, mostly in his hands and feet (it is my understanding that hands and feet are pretty typical). It was a problem for him before he even knew he had PSC, and it was terrible. Though nothing really alleviated the discomfort, he did find a couple of ways to take the edge off ...

1) When the itching was so bad that it kept him awake at night, he would wrap his feet in three layers of towels (alternating hot and cold). We have no explanation as to why exactly this helped, but he suspects it distracted his nervous system. 

2) He also had a square of rough mesh fabric that was pretty useful when it came to scratching itchy feet and hands (don't rub, just press). It didn't provide any lasting relief, but it also served as a distraction and allowed him to at least feel momentary relief in one small area.

Unfortunately, there is really nothing your doc can do to make the itching disappear (and on a side note, Benedryl isn't going to help since the itching is not skin or allergy-related). The medication Ursodiol is often prescribed to PSC patients and in some folks it helps manage the symptoms on the disease, but it is really hard to quantify. Carl took Urso for years. He said it did help to some degree, although it definitely did not eliminate itching altogether. Another patient's experience might be completely different.

The good news, though, is that once you have your transplant itching will be a thing of the past!

Update: I talked to Carl tonight about the itching issue, and here is what he had to say.

"As much as you want to, you must resist digging at your skin. It will not relieve the itching and it will create open wounds that can get infected."


Jen said...

My husband was told to stay away from Ursidol. Not sure why. Have you heard anything about that? He is in between having PSC and autoimmune disease. They can't seem to figure it out yet...

Dawn said...

Hi Jen -- I haven't heard any like this. Most people I know are on Urso. My only guess is that they maybe want to get to an official diagnosis first, because Urso can have some unpleasant side effects, especially GI issues. Not sure, though. Sorry, wish I could be more helpful. I hope he gets a diagnosis soon.

Amanda said...

It is so funny that you say that carl used a rough mesh when the itching got bad, because several times I've caught Chris using the reverse side of our oriental rug.

Anonymous said...

Gerald said, My urso i have been taking since May of 08 when i had my transplant they had to put stints (3) stints in my bile duct and the urso is to keep the blood flowing through the bile duck