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Budesonide (entecort) and swelling of the legs and feet

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Ulcerative Colitis
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Posted 4/14/2016 10:18 AM (GMT 0)
Good day everyone,

My calves, ankles, and feet are now severely swollen. I've searched the forums a few days ago to find see if UC is linked with swelling of the legs and feet, and found a few forums which says yes. They said it usually happens during a flare. Which made sense to me. Before my diagnosis, my feet were swollen and I was flaring. However that flare was bad, and my feet were only swollen a little. I first noticed slight swelling on Sunday. Then Monday morning's bowel movement I had a spot of blood when I wiped. There was no blood until last night, there was a little bit of blood after my bowel movement. Each day, the swelling got progressively worse, to the point where it hurts to bend my ankles, and I'm limping.

I spoke with my GI yesterday, and she said that swelling is a side effect of entecort. She put me on a water pill to get the excess fluid out. Has anyone else experienced this?

PS the pharmacy filled my Rx as a generic, budesonide, if that matters.
Posted 4/14/2016 7:32 PM (GMT 0)
While it may be a side effect, you should still be checked that nothing else is going on because severely swollen is a concern.

Is this the entocort oral? and how long have you been on it?

q
Posted 4/15/2016 12:28 AM (GMT 0)
It's the generic budesonide oral. It's almost 2 weeks since I've been on it. I started hydrochlorothiazide, a diuretic, today.
Posted 4/15/2016 12:43 AM (GMT 0)
I suggest that you ask your doctor to have you use a rectal retention enema rather than the Entocort oral.

What's the location of your UC...throughout or limited to where?

welcome to the forum,
q
Posted 4/15/2016 1:21 PM (GMT 0)
Call your doctor as swelling in the ankles isn't common.

Agreed. A rectal-route enema or foam version of budesonide would produce less side effects (90 percent topical and 10 percent systematic) than the oral would (which is 100 percent systematic). Either that or a delayed-release, oral budesonide like uceris or entocort uc would equally be less side effects. Topical medication doesn't easily get into the bloodstream and cause side effects elsewhere.
Posted 4/15/2016 9:26 PM (GMT 0)
Thank you Q. When I had my colonoscopy a few weeks ago and it was during a flare. My GI couldn't do a complete colonoscopy as my colon was very inflamed and bleeding. She didn't say where it was located. She showed me some pictures, I was horrified. I will ask about the enema.

John, I did, and she put me on the diuretic. I had no idea there's a foam version of the budesonide. The budesonide I'm on is extended release. It's the generic of entocort uc, as my insurance doesn't cover entocort. Maybe it's the dosage? I have to take 3 budesonide in the morning.

I was concerned I was going to flare since I saw blood those two occasions. Thankfully that doesn't seem to be the case.
Posted 5/28/2016 9:18 AM (GMT 0)
After my GI saw the swelling, she suspected it was because of NY extremely low albumin levels. She recommended that I see my internist, and a CT scan. The internist agreed it could be due to the low albumin levels. My internist recommended I see a vein varicose specialist. The varicose specialist said I had dilated lymph nodes, and no clotting. He couldn't check my calf due to the swelling.

The CT scan confirmed the dilated lymph nodes. It showed no inflammation. The varicose specialist and GI agree it's due the low albumin levels.

That was a few weeks ago. I still have some swelling in my legs and feet, though not as severe.
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