Re: Question for Aubrey

[Guest guest]

Margie,

Hi and welcome to the group. My husband, who is 42 was diagnosed with PSC

last year. It was a very frightening time for us, but with the help of the

members of this group I have learned alot about PSC and I am sure you will

find the same support and wealth of information here as well. My husband has

been taking Actigall since his diagnosis and has had no side effects. His

" numbers " did improve dramatically. He has had no real symptoms to speak of

from the PSC, or side effects from the

Actigall other than maybe an extra bowel movement a day. While I have heard

from many sources, as your doctor said, that this drug improves only the

numbers, there may also be evidence that higher doses may slow PSC (other

more knowledgable members of the group, such as Ezra, may be able to fill you

in on this some more). As far as your doctor's flip attitude regarding

cholangiocarcinoma, that was insensitive and unprofessional. Is this

physician a gastroenterologist, or a hepatologist? While our GI doc was

very nice and proficient, we felt it necessary to confirm the diagnosis with

a liver specialist, and once confirmed, felt compelled to be monitored only

by a doctor who treated other PSC patients and was prepared to deal with ALL

of our questions, fears, opinions (of which he has discovered I have many,

courtesy of my education via this group) etc. He has been so far treating

both my husband and myself in a very nice way. As a nurse I have seen many

doctors brush off thier patients questions and leave them wondering what the

heck they were talking about when they left the room. I always advised them

to push for information and if they didn't understand to ask the doctor to

explain again in lay terms. I hope you will find a doctor who meets your

needs in this area. It is important to feel confident that your physician is

acting in your best interest and that you are getting all the facts you need

from him/her to stay in the best condition you can. I can't imagine a doctor

wanting his patient not to be well informed about thier own disease (his

statement that you read too much). My husband's internist tells him " your

wife's is too smart for her own good " (much along the same lines). I think

some docs are threatened by our inquisitions, and don't appreciate being

questioned or challenged.

Anyway, I hope you will find some of the information you need here. You

certainly can count on alot of support from many caring and kind people.

Liz