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Hi everyone, I posted for a while a few months ago when I was first

diagnosed, but recently I've gotten incredibly busy with work and the

kids and so have been keeping up by reading the email posts. You've

all been in my thoughts!

Lately I've had terrible pain in my legs. It's especially bad at

night when I'm trying to fall asleep or when I'm otherwise not moving

(like driving). I don't think it's " restless leg syndrom " because it

doesn't feel itchy, though moving my legs or massaging them does seem

to make it better. It feels more like my legs are sore as if I've

been exercising (which I haven't!).

I had this kind of thing twice in the past - once about eight years

ago, when I was first diagnosed with UC and was also having liver

problems (enzymes off the charts), though I wasn't diagnosed with PSC

at the time. I think it went away once they gave me all the meds for

the UC - like prednisone, Imuran, Pentasa, Cypro (they really loaded

me up then). The second time I had it was recently when I started

taking Asacol (I was only on Imuran at the time, now I'm on both). It

was a side effect that eventually went away. The thing is that I've

been on Asacol for about 7 months now and actually I ran out so I

haven't been taking it for a couple of days, which is exactly when

it's gotten worse. I probably have been doing a little more walking

than usual in the last few days (taking stairs and such in an effort

to be healthy), but nothing extreme.

Do you all have experience with this kind of pain? Is it a sign of

some kind of vitamin deficiency or UC inflamation or can it be PSC-

related? Is it a separate issue? Could it be restless leg after all?

I'm so disturbed because I can't sleep!

Thanks,

Ruth

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>

>

> Hi Ruth,

>

> I get leg pains from time to time, even when not exercising. It's

sometimes a prelude to something being wrong. I drink extra water, as

it'll be worse if you're dehydrated. I also take pain medicine for

it, especially at night, so I can sleep. I think it's PSC related,

but it's not a " bad " symptom like jaundice of ascites. I don't think

this means you're near liver failure.

>

> Marie

>

>

> I've been having leg pains also. The pain is mainly in the upper

thigh. My doctor did an MRI because I have stenosis and have problems

before. I just got the report from the MRI and she says there is

nothing there that would cause the pain. The leg pain gets worse as

the day goes on. I walk each day and if I walk too long the next day

the pain is worse. I don't know if its related to UC or PSC but so I

'm not sure what should do.

Ellen

>

>

>

>

> To:

> From: rblatt@...

> Date: Tue, 13 Jan 2009 06:53:24 +0000

> Subject: Leg pain

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi everyone, I posted for a while a few months ago when

I was first

>

> diagnosed, but recently I've gotten incredibly busy with work and the

>

> kids and so have been keeping up by reading the email posts. You've

>

> all been in my thoughts!

>

>

>

> Lately I've had terrible pain in my legs. It's especially bad at

>

> night when I'm trying to fall asleep or when I'm otherwise not moving

>

> (like driving). I don't think it's " restless leg syndrom " because it

>

> doesn't feel itchy, though moving my legs or massaging them does seem

>

> to make it better. It feels more like my legs are sore as if I've

>

> been exercising (which I haven't!).

>

>

>

> I had this kind of thing twice in the past - once about eight years

>

> ago, when I was first diagnosed with UC and was also having liver

>

> problems (enzymes off the charts), though I wasn't diagnosed with PSC

>

> at the time. I think it went away once they gave me all the meds for

>

> the UC - like prednisone, Imuran, Pentasa, Cypro (they really loaded

>

> me up then). The second time I had it was recently when I started

>

> taking Asacol (I was only on Imuran at the time, now I'm on both). It

>

> was a side effect that eventually went away. The thing is that I've

>

> been on Asacol for about 7 months now and actually I ran out so I

>

> haven't been taking it for a couple of days, which is exactly when

>

> it's gotten worse. I probably have been doing a little more walking

>

> than usual in the last few days (taking stairs and such in an effort

>

> to be healthy), but nothing extreme.

>

>

>

> Do you all have experience with this kind of pain? Is it a sign of

>

> some kind of vitamin deficiency or UC inflamation or can it be PSC-

>

> related? Is it a separate issue? Could it be restless leg after all?

>

> I'm so disturbed because I can't sleep!

>

>

>

> Thanks,

>

> Ruth

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Windows Live™: Keep your life in sync.

> http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t1_allup_explore_012009

>

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