Entocort and getting worse?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jan 24, 2012
Messages
96
entocort and getting worse?

I've only been on entocort for a week, but honestly, my symptoms are getting somewhat worse. I do seem to have more energy, but they took me off the amytriptyline which seemed to be causing a lot of fatigue. Now foods that were safe for me before are sending me running. I still have d, but now it's turning green and if possible smells worse. I didn't think that was possible, but it is. Could this be side effects of the entocort?
 
I never had that issue while taking it and its not on the list of common side effects. Are you taking anything else besides Entocort? Another medication may help a lot as its often the combination of meds that help clear up a flare. My guess is that your flare is getting worse and that the Entocort is too little too late. I'd contact your GI and let them know that your symptoms are worsening. Entocort can take a few days to a couple weeks to fully kick in but my worry is that your symptoms are worsening rather than staying the same.
 
Thanks for the reply! I called to talk to a nurse, but ended up with the same one that told me my results were normal. Basically she said give the medicine time to work and talk to the dr at my follow up on the 3rd of May. In the meantime, things are getting a little better! I still have the get there fast urge, but things are firming up. I didn't realize that would cause pain, but I guess after nothing solid passing through there for a while it would. Having more stomach pain today, quite a bit actually. It started last night, and I've considered taking an endocet several times. Not sure what that's all about. I feel like I took a step sideways coming off the amytriptyline. The exhaustion was horrible, to the point that I stayed in bed almost all the time, but my jiont pain was so much better. Now my knees and shoulder are back to hurting almost constantly. Oh well, as they say you can't have your cake and eat it, too!
 
Oh yes you can! :p Have you considered a second opinion from another GI since this one is so hard to get a hold of? They've apparently instructed the nurses to be their body guards. There are some people on the forum who have their GI's email addresses and can ask questions whenever they want. You may need a medication along with the Entocort to help things get better faster rather than forcing you to deal with all these symptoms or chance them getting worse. Its been two weeks and its only showing minor improvement but with obvious signs that its not enough. I'd push for another medication or a referral to another GI.
 
Hi Jackie,
It took 2.5 weeks of entocort for me to get rid of the D, so there is hope! I was supposed to taper down to 1 pill last week (after being on it for 6 weeks) and went right back to the explosive D so I started taking 2 again, and no D. I never did speak with my GI but with a nurse and had to leave 2 messages before she got back in touch and called in a refill. I'm thinking I need to get a second opinion also, Thanks Crabby!
 
I've thought about getting another opinion but I'm going to hold off for a bit. I really like the dr, but he's in a group and although you are guaranteed to see your dr the nurse who returns calls varies. The dr has been great, especially considering the first gi I went to told me to go home and lose weight and it was in my head. The big d is slowly getting better, it's just painful to have something somewhat solid coming out. I'm not sure why the abdominal pain started again, but if it isn't gone or much better by tomorrow I'll call and insist on seeing either my dr or his physicians assistant. I know from reading on here entocort can take a while to work so I'm trying to balance caution with everything, which is hard!
 
I guess for some people it takes a while to work but for me it was very much like Prednisone where it worked within a few days yet when new symptoms or the same or worse symptoms came along then we knew that steroids alone weren't enough. Its usually the combination of medications that gets people into remission.
 
Back
Top