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So I'm off of the Entocort

J

JillianB82

Guest
So, I went & saw the GI last Wednesday. He told me to go ahead & stop taking the Entocort until Aug. to see how I do. So, I stopped taking it Saturday. Well, here we are Monday & I've had 3 D's already today, vs. having 1 "normal" BM a day when on the Entocort. So, do I call & let him know? Or just wait & see? He did put me on Levbid, but told me to wait till my PMS week to start it, that's in 3 days.

Hmmmmmmmmmmmmmmm
 
Well, i know i haven't posted here before, but have been diagnosed for 11 years. This time, when i stopped entocort, thought all was good! Was officially in remission for the FIRST time. :-( Then, one month later, back on the entocort, another flare. I hate calling back, too, but saves a trip to the er if urs get that bad. This time, i ended up, along with my humira, nexium, b12, with 2000mg flagyl, cipro, entocort, zofran, seems like you can't even keep track sometimes. GOOD LUCK! ( i would call!)
 
JillianB82 said:
So, I went & saw the GI last Wednesday. He told me to go ahead & stop taking the Entocort until Aug. to see how I do. So, I stopped taking it Saturday. Well, here we are Monday & I've had 3 D's already today, vs. having 1 "normal" BM a day when on the Entocort. So, do I call & let him know? Or just wait & see? He did put me on Levbid, but told me to wait till my PMS week to start it, that's in 3 days.

Hmmmmmmmmmmmmmmm

I was in your position as well. When I came off Entocort, I immediately got sick again. As Pen said maybe its just your body adjusting. I ended up going back on the Entocort after about a month with nothing, and I have been on it ever since, though I am trying to come off it again.
 
J

JillianB82

Guest
Pen,

I do have AR, already take a pill for that, but the Levbid is for the D that was only coming during my PMS week, that's why he wanted me to wait. Took me off of the Entocort, wants me to start taking the Levbid when I'm PMSing to see if that calms it & then stops it after my cycle.

I found another def. of the drug, maybe this makes a little more sense for you~

Levbid (Hyoscyamine) is used to treat a variety of stomach/intestinal problems such as cramps and irritable bowel syndrome. It is also used to treat other conditions such as bladder and bowel control problems, cramping pain caused by kidney stones and gallstones, and Parkinson's disease. In addition, it is used to decrease side effects of certain medications (drugs used to treat myasthenia gravis) and insecticides.

This medication works by decreasing acid production in the stomach, slowing down the natural movements of the gut, and relaxing muscles in many organs (e.g., stomach, intestines, bladder, kidney, gallbladder). Hyoscyamine also lessens the amount of certain body fluids (e.g., saliva, sweat). This medication belongs to a class of drugs known as anticholinergics/antispasmodics.
 
J

JillianB82

Guest
Carisa, s.a.m.:

Thanks for your input! I was hoping to be off of it for awhile $60.00 a month is starting to add up....ugh!
 
J

JillianB82

Guest
I've had bad cramping pretty much from my 1st period....I was put on the BC pill when I was about 15. I've just learned to live with it. I started my 1st flare last Aug.....ever since then my PMS/Period week, the cramps, D, & throwing up have gotten out of hand. So he is trying the Levbid to see if that helps :)
 
JillianB82 said:
So, I went & saw the GI last Wednesday. He told me to go ahead & stop taking the Entocort until Aug. to see how I do. So, I stopped taking it Saturday. Well, here we are Monday & I've had 3 D's already today, vs. having 1 "normal" BM a day when on the Entocort. So, do I call & let him know? Or just wait & see? He did put me on Levbid, but told me to wait till my PMS week to start it, that's in 3 days.

Hmmmmmmmmmmmmmmm
My doc is taking me off entocourt and told me that you have to wean yourself off it. I'm on 3 pills a day and the instructions were to go down to 2 per day for 10 days and then stop.

A couple of months ago I ran out of entocourt right before Christmas holidays and it was about a week before the doc's office reauthorized my script. Meanwhile I was flaring like crazy from having gone cold turkey.
 
JillianB82 said:
I've had bad cramping pretty much from my 1st period....I was put on the BC pill when I was about 15. I've just learned to live with it. I started my 1st flare last Aug.....ever since then my PMS/Period week, the cramps, D, & throwing up have gotten out of hand. So he is trying the Levbid to see if that helps :)
I don't know if this is germane but I was told by Walgreens that they are not making Hycosamine anymore. You might check into Bentyl as an alternative. It works well for me.
 
B

bookmarkmaster

Guest
I was on Entocort and experienced terrible anxiety, racing of my heart, and would cry at anything. Doctor took me off Entocort cold turkey and put me on anti-anxiety medication which is not really helping. Another reason he took me off Entocort is that i had colonoscopy it showed that I did not have crohn's and colitis like they thought I had. What I was wondering is how long after stopping Entocort will my anxiety and racing heart go away does anybody know. I was on it for 4 weeks.
 
hi everyone i'm new here i'v had symdoms of crohns for 2 years .....it took me six months to realize my rush to the bathroom up to ten times a day wasn't going away on its own so i went to the doctors...took 7 month to see a specilist and another 3 to get a colonoscopy ....i have cronhs the doctor gave me pentasa 500mg...3 pills twice a day i took them for about 5 days made me dizzy and i couldn't think straight ..like hollow head i called the doctor they said to keep taking them for at least two week so my body can get use to the med but i stoped them i go back to see him in oct than my family doc put me on blood pressure med.....im messed up because im scared to take the pill for my blood pressure this is all so over welming ....i go to the rumitoligest in oct too iv had some kind of unknown arthitis for about 8 years so my stomach doc wants me to see my arthitis doc .....could all my swelling and joint pain be related to crohns!!!!!sorry for taking up so much space just scared with all this expecally the meds ....too scared to take them help!!!!
 

forum contributor

Captain Obvious
bookmarkmaster said:
I was on Entocort and experienced terrible anxiety, racing of my heart, and would cry at anything. Doctor took me off Entocort cold turkey and put me on anti-anxiety medication which is not really helping. Another reason he took me off Entocort is that i had colonoscopy it showed that I did not have crohn's and colitis like they thought I had. What I was wondering is how long after stopping Entocort will my anxiety and racing heart go away does anybody know. I was on it for 4 weeks.
Hey, B. How many were you taking per day? When I was on it, I was taking 9 daily. I'm pretty sure you're not supposed to be taken off of that cold turkey! Did you find that the Entocort was helping you at all?

Have you posted a story in My Story yet?
 

farm

Captain Insaneo
I just got off Entocort this past Saturday and have had several more D BM's each day since. He game me a packet of probiotics to take to get the D undercontrol but said I should be fine in about a week or so.

Maybe you need some probiotics? Good luck.
 
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