- On Topic - Itching and Fatigue

[Guest guest]

,

Lily was on track with the Actigall. Increasing your does will probably

help, but will take some time. I personally didn't like Actigall and was

switched to Urso, which is basically the same drug, but I had better

results with it (less itching and better labs for example). Could have

been in my head, who knows.

Suggest an ERCP. How were you dx? Not all drs prefer such an invasive

procedure but will be able identify and resolve any blockage you may have.

That could be the cause for the itching and pain. Being tired, sorry that

just goes with the territory. Ask the dr about cholestrimine (sp). It is

a powdery substance you mix with water or juice. Can't take it within 1

hour before or 3 hours after meds, but it helps some. For others, like me,

Rifampin was particularly affective. It is used for TB. Liver functions

must be monitored more closely since it is recognized as being hard on the

liver.

Some things you may want to try if an ERCP is not wanted or won't be

considered by the dr., try eliminating as much animal fat in your diet as

you can. Many members here found that consuming what would be considered

avg. amounts of fat caused them to itch more and if I remember, feel more

tired as well. For energy, try smaller more frequent meals or snacks.

With us, carbs and sugars become our friends. Our liver cannot synthesize

the nutrients we feed it so therefore energy is not stored like a healthy

individual. You burn use what you eat and excrete what you don't. That is

my simplistic explanation. I tended to eat things high in carbs and

sometimes sugars and it seemed to help. For non-medicinal treatment of

itching, try Camphadil (help me out or Maureen). It is a

moisturizer. I would recommend looking into Milk Thistle or SAMe. Both

are said to help the liver rejuvenate itself and aid in removal of toxins.

It is safe and quite a few of us take it. Sunlight, in low quantities,

seems to help as well.

Hope some of these suggestions will provide you some relief.

Darin

P.s. By the way, if you don't think you are getting the appropriate care or

response, then find another dr. You won't be the first here nor the last

to have to search for a new dr (make sure its a heptologist). And always

keep in mind, you are and always will be your strongest advocate (or

spouse/loved one in many cases but some one has to be). Don't be afraid to

ask the dr a question. We have found several drs that are unfamiliar with

psc and afraid to admit it or learn about it.