Leg pain

January 12, 2009

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

January 13, 2009

Hi Ruth,

Your symptoms are just like my wife’s.

She has not itching either, but has been diagnosed with restless leg

syndrome. She tried Requip, but it didn’t do much for her so the

doctor tried Neurontin. That seemed to do the trick. She does not

have either PSC or UC.

Joe

PSC-UC 1990; Liver Tx 2007

I don't think it's " restless leg syndrom "

because it doesn't feel itchy

January 13, 2009

Hi Ruth,

Your symptoms are just like my wife’s.

She has not itching either, but has been diagnosed with restless leg

syndrome. She tried Requip, but it didn’t do much for her so the

doctor tried Neurontin. That seemed to do the trick. She does not

have either PSC or UC.

Joe

PSC-UC 1990; Liver Tx 2007

I don't think it's " restless leg syndrom "

because it doesn't feel itchy

January 13, 2009

Hi Ruth,

Your symptoms are just like my wife’s.

She has not itching either, but has been diagnosed with restless leg

syndrome. She tried Requip, but it didn’t do much for her so the

doctor tried Neurontin. That seemed to do the trick. She does not

have either PSC or UC.

Joe

PSC-UC 1990; Liver Tx 2007

I don't think it's " restless leg syndrom "

because it doesn't feel itchy

January 13, 2009

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

To: From: rblatt@...Date: Tue, 13 Jan 2009 06:53:24 +0000Subject: 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