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I'm wondering, of those PSCers who administer their own meds, on

average, how compliant are you with your medication? The allure of

freedom has made me down right delinquent!

My " freedom " has had some consequences lately, but if you

ask me if it was worth it for those brief few weeks of no meds, living

like a normal person, I think it may have been.

CD in Boston

UC 1995

PSC 00/01 (I can never remember)

Acute necrotizing pancreatitis leading to partial pancreas removal

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HI,

I have no compliance problems with pills, never forget as they are easy. I'm

not real good with inhalers etc, especially if they are steroid based so you

have to gargle etc after. Seems too much bother...then when the asthma

flares up I think..gee I've been a bit slack lately!

Lectures about compliance don't help, you've got to be happy taking the meds

you are on to make it easy.

Good luck,

Penny T (Australia)

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Nearly 100%. For me, " normal " is when I DO take my meds. Freedom is feeling

good - as in " normal " bathroom habits, " normal " breathing (I have asthma), etc.

When I was first diagnosed with UC, I did try to taper off the sulfasalazine.

It just doesn't work, at least for me. I rarely even think about meds any more

- it's just about automatic.

Arne

56

UC 1977, PSC 2000

Alive and well in Minnesota

---- dirranecor wrote:

=============

I'm wondering, of those PSCers who administer their own meds, on

average, how compliant are you with your medication? The allure of

freedom has made me down right delinquent!

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I've heard from early on that your chances of getting a liver transplant,

should you need one, are dependent in part on proving that you can be

compliant - i.e. follow doctor's orders, especially when it comes to taking

your meds. It doesn't help much to say that you'll be compliant. You need a

solid history of being compliant. Thus, even though this was freeing, I

wouldn't suggest continuing on the course you're on. Being compliant can be

a factor in whether or not you'll even be listed for a liver transplant.

There are other factors as well that count as to whether or not you'll be

listed, but compliance is a huge factor. There will be lots of meds to take

if you get a liver transplant, so the docs need to know you'll take your

meds. Otherwise, one of those rare livers will go to someone else who has

proved already that they'll be compliant.

I went w/o meds for a short time after my colectomy in 2000 - I was

following doctor's orders, although I suspected the docs were wrong - I

still had some of large intestine left and still had UC. Turns out I still

needed the UC meds, and then some. But for a brief period I went w/o meds,

and yes, it was freeing.

-Marie

>

>

>I'm wondering, of those PSCers who administer their own meds, on

>average, how compliant are you with your medication? The allure of

>freedom has made me down right delinquent!

>

>My " freedom " has had some consequences lately, but if you

>ask me if it was worth it for those brief few weeks of no meds, living

>like a normal person, I think it may have been.

>

>CD in Boston

>UC 1995

>PSC 00/01 (I can never remember)

>Acute necrotizing pancreatitis leading to partial pancreas removal

>

_________________________________________________________________

http://liveearth.msn.com

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While I agree that going med-free would feel like true freedom, I

think that remembering to take my meds is a small price to pay for

maintaining remission of UC and feeling better in spite of the PSC.

I do admit to forgetting to take them on occasion even though I

pre-pour my pills once a week into a Dossette and it's easy to forget

the once-a-week meds. Overall though, I think my compliance is fairly

high.

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