Re: PSC 9/99 - ITCHING

[Guest guest]

>

>

> In Sep 99, i was diagnosed with PSC but never suffered from any

> symptoms. I never took any prescribed meds because I didnt think it was

> necessary. On my B-day, I made a promise that I would start listening

> to the Drs. and take the Actigall 300mg...well, that didnt go to well,

> within 1 month I became extremely itchy. So i stopped, my next appt. I

> explained so they gave me Ursoforte, of course I waited a few months

> till the New Years to begin the next promise and lo and behold, the

> itching came back but this time i didnt stop. They gave me HYDROXYZINE

> and Questran to help . My Bilirubin suddenly jumped from 1.2 (since '99

> thru 2005) to 5.5, but i continued on with the Ursoforte until the

> itching became intolerable and my bilirubin went till 7.0. I stopped

> everything and the itching reduced, but 2 to 3 weeks ago, i took

> Isagenix natural Accelerators (cleansing system) hoping it will help

> reduce my Bilirubin and my yellowing eyes. Of course, it didnt work and

> now I have been so itchy that i cant sleep, of course its my feet that

> are the worse. I am sure my Bili is still high because I can see it in

> my eyes. I am going on 2 wks that I have not been able to sleep well. I

> am averaging 2 hrs a night...Does anyone have any advice? I will really

> appreciate it. I am using Benadryl spray but that doesnt help anymore.

>

> MICHELLE

>

:

I've had PSC since 1986 and have been on URSO since maybe 1995? I

never noticed the itch with URSO (maybe that's causing it now.. but

when I had my colon (I'm now an ostomate) it gave me terrible gas,

etc. when I would first go on it then that would stabilize. I was on

1200mg/day for a few years and have been on 2400mg a day since the

late 1990's I think.

Lately I've had the creepy crawly, wire brush itchies more than the

'rash type' (feels good to scratch) itchies - I'm actually thinking I

may have two issues. I had itching that was completely controlled

from 1986 to sometime in the late 90's then I didn't take anything

until it came back last year and the Questran no longer works as it did.

Anyway, the standard things to have your Dr try are Questran (I take 6

per day - I must be weird because I don't think it's that bad and

don't mind taking it). Or they can try you on Rifampin (I've tried it

too, might help a little bit but I can't tell) Usually works on 90%

of folks. Then you get into the odder ones. Naltrexone (An opiod

antagonist) - I tried recently and seemed to 'dull' the snap crackle

pop itching but I wasn't sure. I also tried Gaba Pentin which seemed

to help the snap crackle pop but made the rash type itch worse I think.

What I've been doing lately that seems to work better than all the

meds is staying away from fats, (maybe 5-10g/meal max), eating a lot

of Oatmeal, etc.

I'm also trying to get some Sun (maybe 10 mins) 3 days a week or so to

see if that helps.

I take Atarax at night which does seem to help a little, and does help

me sleep.

Hope something in here helps.