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Tappering off Entocort!!! i feel all weird

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Crohn's Disease
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Posted 2/13/2008 9:14 PM (GMT 0)
Hello,

I am new to this but i feel like i can't find anything else online and I need feedback. I was diagnosed with Crohns in May of 2007 and was immediately put on 9mg of Entocort, which after 3 months was dropped to 6 mg and I have been on 6 mgs since September 2007. As of 3 weeks ago, I was started on Asacol 4 tablets a day 400mg.  And The doc it tappering me off entocort, he just dropped my dosage to 3mg yesterday and i have been feeling quesy, weird, slight headache. Not sure if this is suppose to happen because I am tappering off.. Has this happened to anyone else?? please let me know!!

Posted 2/13/2008 10:13 PM (GMT 0)
Yes!! I am one of the few who had bad withdrawals coming off of it. For me my blood pressure got really low. Increasing my salt intake and having small amounts of caffeine (1 coke over 4 hours say) helped me out. I needed a day or two off from work. I was so dizzy. It sucks.
Posted 2/13/2008 11:10 PM (GMT 0)
Call your doctor and tell him what your symptoms are he may want to slow you taper so you don't feel so weird. If your symptoms get worse then it is a medical emergency and you should call 911.
Sj
Posted 2/14/2008 2:53 AM (GMT 0)
Ditto, call doc. Your body gets dependent on the Entocort, so some people have trouble tapering down.

Tapering down to 3 mg was no problem for my daughter. But tapering off, completely, touched off a flare.  

Posted 2/14/2008 5:11 AM (GMT 0)
I emailed the doctor to see what he thinks I should do.  I really want to get off the entocort so I hope that the asacol will work on its on. Entocort made me loose hair like crazy, and doctor was scared that since i have the joint swelling problem that it would really trigger oestoporosis with me.  I will keep you guys update. If anyone else has anymore feedback as to what happened to them when gettign off entocort and what they did to eleveate it please post. Thankfully i went to the BR twice today.
Posted 2/14/2008 5:15 PM (GMT 0)
I have taken Entocort before, but I ended up having a resection before I was completely off so I don't know if I had any side effects as I was recovering from the surgery. But I did want to tell you I take Asacol 400 mg. 6 caplets a day. It has worked really well in helping me to stay well. I thought one time after the above mentioned resection that I no longer needed it, and quit taking it. Within a month or so I was feeling bad again and went back on the Asacol and felt much better within a few weeks. I have also in the past year started taking probiotics daily and that also has really helped me alot. I personally think all of us with Crohns should take probiotics. I was having alot of D and now only go 1-2 times a day and they are normal stools. Good luck to you! Keep us posted on how you are doing.

God Bless,
Gail *Nanners*
Posted 2/14/2008 5:27 PM (GMT 0)
seems like the doctor said this might happen, or that its a non-specific virus like something else in my body...lucky me! I hope this goes away soon. he said to stay on a lot of fluids which is what I am doing. just sucks, im shaky, and I can't focus my eyes. I hope this goes away soon... ill keep u posted
Posted 2/14/2008 10:44 PM (GMT 0)
I felt the same way and my doctor was doubting that it was the entocort but it most definatly was.
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