Studies

General
1

I have been diagnosed going on four years now and I have been offered a place on a clinical trial. I hesitant given the idea of experimentation. Does anyone have any pearls of Wisdom you could share?

2

What kind of clinical trial is it? Please provide details!! Thanks :slight_smile:

3

It is a double blind placebo test for a new drug that is meant to help treat PSC. has anyone had experience with this kind of trial?

4

Do you take at he moment Urso?

5

I would participate…psc has no cure so only chance we have is to hope for a cure (drug).

6

Find out the as to what the clinical trial is about. I personally would not hesitate to part of a study. There are rules about such studies and your life or health will not be at risk.

Adrian

7

to put it bluntly: it's up to you how much risk you you want to take.

If you are on URSO, you will have to phase out, then the study - you could be half a year without medication if you happen to catch the placebo!

I had the same offer (for NOR-URSO) and decided against it. Someone I met in a German forum took part, got much worse with his PSC and dropped out.

So decide for yourself

regards

Rippi

8

Hi I had tried to get in to the study. I dropped the Urso and my blood values get worth. But the reason was that Urso works for my and that is a good thing to now. Urso is a funny thing. For some people it do his job but for other there is now difference whether he take it or not. I read different studies resume. More than half have had no change in blood values with Urso. It is a hard to decide to drop Urso but the good thing is that you after that now it helps you or not.

I hop next year will start the next step of the studio were you can take urso before you take nor-urso. In this part of the study will be no placebo anymore. The difference in this part will be the amount of nor-urso. Cross fingers that this part will be start soon.

9

Chat reply:

Hi rippi from Gelsenkirchen

rippi said:

to put it bluntly: it's up to you how much risk you you want to take.

If you are on URSO, you will have to phase out, then the study - you could be half a year without medication if you happen to catch the placebo!

I had the same offer (for NOR-URSO) and decided against it. Someone I met in a German forum took part, got much worse with his PSC and dropped out.

So decide for yourself

regards

Rippi