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First day on Entocort

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Crohn's Disease
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Posted 9/20/2013 1:18 PM (GMT 0)

Hi all, I have had mild to moderate CD for many years.  I can't remember the last time I needed steroids, but am now in a bad flare and am starting Entocort.   Does anyone have any good things to say about this drug?  I'm nervous about taking it.  I really need to gain a few pounds but it's the other side effects I'm scared of.   Positive thoughts and words will really help me today.  Thanks!

Posted 9/20/2013 2:32 PM (GMT 0)
there should be zero side effects from Entocort. If you stay on it at a high dose (9 mg) for a few weeks you might start to feel some systemic side effects like you'd get from Pred. Most GIs like to keep Entocort on board for 3 months max.
Posted 9/20/2013 2:48 PM (GMT 0)
Thanks kazbern, I am starting at 9 mg and then tapering down.
Posted 9/20/2013 3:16 PM (GMT 0)
Hi Dawn, I have been on Entocort for almost 2 years now. Pred's popular side effects: weight gain and moon face are not evident w Entocort. On the contrary, I lost weight while on Entocort.
Hope you feel better soon :)
Posted 9/20/2013 3:44 PM (GMT 0)
Minnietoty thanks for your response. I'm calming down a bit. Be well :)
Posted 9/20/2013 7:47 PM (GMT 0)
I have been on prednisone for 6 months. Have never had any of the side effects people complain about. I've tried weaning off them several times. I originally started at 60mg a day. Every time I get weaned down to 20mg a get horrible cramping. Raise me back up again. This time I got down to 10mg and the cramping was worse then usual. Upper me back to 30mg this time. I am to start Humira very soon so I hope I can get off the prednisone. During the 6months I haven't gained a pound. I definitely need the weight. I weigh 110 lbs. Started at 198lbs when I originally got sick
Posted 9/21/2013 12:27 AM (GMT 0)
Dawn, I never had any issues with Entocort. No side effects whatsoever.
Posted 9/24/2013 5:16 PM (GMT 0)
Thanks everyone for your responses. So far so good on the Entocort, no problems at all.
Posted 9/25/2013 6:04 PM (GMT 0)
Worked for me, no side effects.
T
Posted 9/26/2013 1:21 AM (GMT 0)
The side effects were far milder for me compared to prednisone and I was on it for over a year.
Posted 10/26/2013 6:53 PM (GMT 0)
Hi dawn227,

How is entocort working for you? I've been on it for a month now. I haven't had any problems before. But. I recently started having nausea and tiredness. I've been having a lot of different kind of temporary symptoms like sweating, feeling sick, confusion etc.

Unfortunately I'm not allowed to taper down.
Posted 10/28/2013 2:25 PM (GMT 0)
Hi Usher, sorry to hear you're not feeling well. I had no trouble with entocort and am tapered down to 3 mg now. I see you're on iron supps, that causes me nausea. Have you had bloodwork done recently?
Dawn
Posted 10/28/2013 7:43 PM (GMT 0)
Hi dawn227,

Yes! I had my blood test done. My hemoglobin level is 11.4 g/dl, slightly out of normal range and other things are in the normal range, except CRP 2.4. Iron supplement was the crook. I stopped consuming it. I also tapered on entocort. I used to take 2 times, now only 1 time. I used to have wide range of side effects like nausea, dizziness, joint pain, bloating, excess water in eyes and name it. I hardly have nausea and those symptoms now. I'm planning to go on SCD at least for one year to avoid CD from getting worse in the future.

I think you have mild CD. When were you diagnosed? What symptoms do you have? How are your symptoms now?
Posted 10/29/2013 2:28 PM (GMT 0)
Hi Usher, I sometimes have a fuzzy brain feeling which I've blamed on hormones, but it could be the meds.
I have been taking Asacol for the past 6 months, switched from Lialda.
I was diagnosed with UC when I was 10; I'm now 52 and my diagnosis has changed from UC, to chrons colitis to CD over time. Never had surgery, thank goodness. My symptoms are weight loss, nausea and occasional pain. I go from constipation to D frequently also. I checked out the SCD diet, I wish I had the willpower for it but it is too strict for me. I try to eat healthy, make fruit smoothies and veggie juices but I do like my snacks too. Glad to hear you are feeling better.
Posted 10/29/2013 6:01 PM (GMT 0)
Hi dawn227,

Thanks for sharing the information on your CD. I've been having GERD recently. I think, it was because of that I had nausea, bloating and dyspepsia. I went to the my family doctor and got PPI today. I've to see how it works.

Since you're drinking fruit and vegetable juices, you can say that you're on SCD to some extent. The SCD is very important for me, since I've been suffering from dyspepsia for many years. I know, it's quite strict and requires some time to cook the food. In the end, you'll have a strong gut and you can start over again. I never knew that nausea was one of the symptoms of CD. I thought the major was diarrhea.

I'm glad that you haven't had any surgery. You are one of the luckiest persons wit CD. I wish you good health.
Posted 5/8/2017 1:55 PM (GMT 0)
Minnietoty..

Does entocort make ur gastritis and gerd worse or doesnt botter u at all?
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