Tappering off Entocort!!! i feel all weird

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Candy02783
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/13/2008 2:14 PM (GMT -7)   
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!!

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 2/13/2008 3:13 PM (GMT -7)   
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.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/13/2008 4:10 PM (GMT -7)   
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

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/13/2008 7:53 PM (GMT -7)   
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.  

Candy02783
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/13/2008 10:11 PM (GMT -7)   
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.
25 year old female, Diagnosed with Crohn's Colitis May 2007
May 2007-August 2007 Entocort 9mg
September 2007-February 2008 Entocort 6 mg
Currently tappering off Entocort- on 3mg right now
Asacol 400 mg- 4 tablets, twice a day (morning and dinner)
Seasonique- 3 weeks on 1 week off--taking it like normal birth control not like your suppose to take it.
 
Current Symptoms- 2 to 3 times a day bathroom; previous symptoms right knee and left foot swell(last time this occurred was during law school finals time in December 2007)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/14/2008 10:15 AM (GMT -7)   
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*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Candy02783
New Member


Date Joined Feb 2008
Total Posts : 9
   Posted 2/14/2008 10:27 AM (GMT -7)   
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
25 year old female, Diagnosed with Crohn's Colitis May 2007
May 2007-August 2007 Entocort 9mg
September 2007-February 2008 Entocort 6 mg
Currently tappering off Entocort- on 3mg right now
Asacol 400 mg- 4 tablets, twice a day (morning and dinner)- Since January 25th, 2008
Seasonique- 3 weeks on 1 week off--taking it like normal birth control not like your suppose to take it.
 
Current Symptoms- 2 to 3 times a day bathroom; previous symptoms right knee and left foot swell(last time this occurred was during law school finals time in December 2007)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 2/14/2008 3:44 PM (GMT -7)   
I felt the same way and my doctor was doubting that it was the entocort but it most definatly was.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 

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