Re: Introduction and comments

[Guest guest]

Wow, , that's a long time to be symptom-free - congratulations.

Have you been taking any medications for the PSC since 1983? Urso?

Fish oil? I would like to know if your doctors recommended any

particular regimen, or if you think there's anything you did that

helped stave off the full-blown PSC for 14 years. Thanks and best of

luck,

Nina in Philly

> PSC. I was dx:d 1983 with UC and small duct PSC. Small duct PSC did

not progress until

> beginning of 90's and has since developed to classical large duct

PSC.

[Guest guest]

, that's very very interesting and thanks for sending the

link. I just wanted to go over that time-line with you, because I

think it's amazing. You were diagnosed in '83 and started taking

sulfasalazine, then switched to a 5-ASA at the end of the 80s, and

in the early 90s your small duct PSC started to progress? There

have been some posts of articles regarding sulfasalazine and some

anecdotes about it possibly holding off progression before, but that

may be the most direct-sounding connection i've heard yet. Have I

put together your timeline correctly? Also, you mentioned that you

think about your diet, etc. Does your adherence to a healthy diet

correlate similarly to progression and slowing of the PSC?

Thanks so much for the information,

Nina in Philly

> I have been on sulfasalazine for the UC almost the whole time

except couple of years in

> the end of 80's, when I was on 5-ASA (mesalazine, Asacol) and some

time in 90's (half a

> year - one year).

[Guest guest]

>

> May I ask how you were diagnosed?

I was diagnosed in summer -83 with UC (x-rays). In the autumn I had

colonoscopy, UC

was quite severe, and blood tests. ALP was clearly elevated. Doctors ordered

ERCP , which

exhibited caliber changes in intrahepatic bile ducts and narrow intrahepatic

branches.

Intrahepatic sclerosing cholangitis was the diagnosis.

More below in the next reply...

[Guest guest]

Hi Nina!

I'll try to put some notes between your text to clarify some points.

>

> , that's very very interesting and thanks for sending the

> link. I just wanted to go over that time-line with you, because I

> think it's amazing. You were diagnosed in '83 and started taking

> sulfasalazine, then switched to a 5-ASA at the end of the 80s, and

> in the early 90s your small duct PSC started to progress?

I was on 5-ASA only for brief periods, round one year at once I would guess.

There was

also some time without both and just on metronidazole and urso. It is bit hard

to

remember afterwards (with only occasional notes and tests in my own files), when

exactly

the lab values did what. Anyhow,when I had ercp in 92-93 the doctors were

surprised to

see, that the picture of bile ducts had basically not changed at all from -83.

Under those

years I had though had different medications and also different diets. The ALP

had also

been fluctuating, most just slightly above the upper normal limit, but sometimes

twice the

upper limit, sometimes below upper limit (both seldom). My UC has been calm all

the time

from -83 until today, except a salmonella as souvenir from Bali and some minor

flares.

Some general remarks about the medication could be done based on the lab test

history.

Sulfasalazine seems to be better then 5-ASA. Urso is better then no urso.

Metronidazole

and urso was better then urso or metronidazole alone, or metronidazole and

5-ASA.

I am sorry, but it is really difficult for me to make exact evaluation, how

different

medications have worked. For that one should actually go throw all the medical

history,

which is complete only at the university hospital.

The big picture would be, that during the first ten years I was mostly on

sulfasalazine, had

also metronidazole towards the end of the period and just started with urso.

After that it

was first metronidazole and urso, then mostly urso and sulfasalzine. PSC showed

no

progress in first ten years, then started to show progress and developed to

classical psc.

Starting with small duct psc obviously gives a slower developement. The research

literature seems to say, that small duct psc sometimes does not develop at all

to large

duct psc and anyhowe has a better prognosis.

There

> have been some posts of articles regarding sulfasalazine and some

> anecdotes about it possibly holding off progression before, but that

> may be the most direct-sounding connection i've heard yet. Have I

> put together your timeline correctly? Also, you mentioned that you

> think about your diet, etc. Does your adherence to a healthy diet

> correlate similarly to progression and slowing of the PSC?

I would say, that a healthy diet seems to be beneficial, even though I myself

have not been

always on a healthy diet, which I slightly regret. But quite healthy most of the

time. In the

beginning in -83 I had a very strict diet: mostly vegetarian, fish, nothing

fried, very little

spices, few " chemical " products (lemonade, sweets etc.). Lots of easy exercise

in fresh air,

avoiding stress, concentrating to become healthy. That definitely helped and I

had a good

start in fighting back for my health.

I hope these notes helped a little, happy to share information and happy, if we

together

will find better ways to live with this riddle psc.

Best greetings