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Anyone have edema (swelling) from Entocort?

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Crohn's Disease
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Posted 7/20/2016 1:10 AM (GMT -5)
I've gotten puffy and my feet have swelled up a bit on prednisone. But I've noticed I'm getting it with entocort now too, almost seems worse then I can remember having before with my feet. I'm at 3 mg, looking to just get off of the stuff. Hoping it gets better when I'm off, it's uncomfortable having your feet all puffy. I feel like I'm retaining water elsewhere too. So much for it not getting in to your whole system.
Posted 7/20/2016 9:04 PM (GMT -5)
I just recently started Entocort. I feel like I have an increased appetite, but may be my imagination. I was wondering how long it takes to notice an improvement with symptoms of a flare??
Posted 7/20/2016 10:20 PM (GMT -5)
It took me a while longer to see relief then it did with Prednisone. I think the side effects are less in most people, but we can still get them. I'm not completely starving all the time on Entocort, but I have ate more then without it. I think I'm still seeing some insomnia with it. Seems like it took longer for all the usual side effects to kick in too, but yet here they are. I think it took 3-4 weeks before I saw any improvement.
Posted 7/29/2016 5:19 PM (GMT -5)
With Entocort I saw a decrease in symptoms at the 9 day mark and a complete disappearance of symptoms at 2 weeks. Sadly I had a TON of side effects, including: increased appetite (I gained a ton of weight I couldn't really afford to gain), increased chance of swelling in my ankles, severe insomnia, mood swings, non existent sex drive, and mania like symptoms.

I weaned off it in late April because of the side effects and my symptoms returned but not as bad as they had been. I miss it but it wasn't worth the side effects and I was on it longer than I should have been really.
Posted 7/30/2016 9:03 PM (GMT -5)
This is my 5th year on Entocort. I started off at 3mg but saw no improvement. Then the dose was upped to 6mg and that was the best time I've ever had since I was diagnosed. However, there were times when the dose was upped to 9mg. Entocort has been a life-saver for me. I neither gained weight nor did I have any kind of edema. I still carry some fat in my back and legs from pred. After I started remicade, I tapered Entocort to 3mg. Still we react differently to meds. I've never felt any relief of pain or improvement but my GI insisted on keeping me on it for more than a year until it was replaced by Entocort. Are you on the original or generic type of Entocort?
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