Entocort reviews and experiences

[Sailorluna]

My doc wants me to start entocort. Anything I should be looking for? What have your experiances been on this med? Thanks! I appreciate any thoughts.

 

[BLM]

Entocort is pretty mild only absorped in the intestines. With my experience I had awful migraine headaches, insomnia and fatique. I was perscribed amitriptaline which helped me with the side effects. Otherwise its pretty mild and most handle it well. Although it helped me, it never really solved the problems I was having.

 

[Becky]

I have been on it for about 2 yrs now with no side effects.

 

[Cat-a-Tonic]

I've been on Entocort for a couple of months now. It works pretty well, I still have about one bad day a week but that's a lot better than when I wasn't on any meds. Like BLM mentioned, I also experienced chronic daily headaches from Entocort, and I was also put on Amitriptyline to control the headaches and that works well. I haven't really had any other side effects except occassional dizziness which went away after the first few weeks of being on Entocort.

I did have a problem trying to taper Entocort - my GI put me on 9 mg for 6 weeks, and then he said I should taper to 6 mg. When I tapered, I flared back up again right away, so now I'm back on 9 mg for another 6 weeks. I'm not looking forward to tapering again but we'll see how it goes. Good luck to you and I hope Entocort works well for you.

 

[bushydougie]

I have been on Entocort for 7 weeks. It took a month before I felt any benefit from it but when I did I felt a lot better. The side effects I've had have been nausea and dizziness but these come and go and are not too bad. My skin has been really bad with spots which isn't nice but I suppose isn't the worst thing in the world. I've now had to start tapering from 9mg to 6mg as the GI didn't want me to be on it at full dose for longer than 6 weeks.
So I suppose the best advice I can give is don't expect it to work straight away. After a couple of weeks I thought about giving up as nothing was happening but I waited it out and 2 weeks after that it started to kick in which was great
Good luck with whatever you decide

 

[Sailorluna]

Thank you all! I started it this morning. So far no side effects other then strange antsy-gotta-do-something feeling for a few hours today.

 

[reidster]

I was on Entocort for 3 years. My face had swollen up, not as fast as prednisone. Also caused cysts under the skin that were ingrown, with no "head".

 

[countrycoffeehouse]

I had horrible swelling in my legs and ankles.. think LOGS for legs.. My doctor said I had developed a toxcity to it and stop taking it.. that was after 10 days on it..

 

[NatalieMT]

I've been on Entocort a year and a bit now, no side effects to report. Haven't had any problems! It's helped me a lot, hasn't solved my problems completely but I feel 10 times better when I take it compared to if I was to stop it.

 

[Sandy]

I've been taking budesonide for about ten years. Stupid, I know. But it is the only thing that works. I get it compounded (so my doc can prescribe any dosage), and I put 5 mg in a Rowasa enema every night and take it (I have disease in the rectum and sigmoid colon, so Entecort wouldn't get it to the right area). I'm pretty sure it makes me depressed and irritable. I have a hard time getting off it -- I went from 6 mg to 5 mg -- flare up. Tried 6 mg to 5.5 mg. That worked. 5.5 mg to 5 mg. That worked. 5 mg to 4.5 mg -- no way. So I'm back up to 5 mg, and immediately felt depressed. And I was feeling better -- I think because of the slowly lowering dosage.

Hope you have better luck with the stuff!

One question: how do people go from 9 mg to 6 mg to 3 mg of Entecort? I sometimes wonder if the manufacturer should make it in smaller increments. I get it compounded so I can get it at any dose, but Entecort has a special coating.

Good luck, SailorLuna!
Sandy

 

[Sandy]

Forgot to mention: Entecort is budesonide with a special coating.

 

[crazycanuck]

Yeah I tried budesonide as a sort of bandaid in april (when my flare started) till I could get onto remicade. I had no side effects at all however no effects on my crohns either really. Saw next to no change unfortunately.

 

[Sandy]

It's interesting how the labeling for Entocort says "be careful tapering off oral corticosteroids" but nothing about "be careful tapering off Entocort."

Crazycanuck, where is your disease? I wonder if the Entocort was getting to the right place.

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

Other stuff for:
Seizure disorder
Hypertension
GERD
Depression (Probably due to corticosteroids)
Glaucoma (Probably due to corticosteroids)
Osteopenia (Probably due to corticosteroids)

 

[crazycanuck]

All over the place. Mouth, spotted small intestine, lots in colon and most is in rectum. I was on it because I cant take prednisone and play hockey so as a milder option I did that. It was only suppose to be for a month but remicade took forever to get onto because of insurance.

 

[Sandy]

Well, I don't think Entecort would help with a lot of your disease, because, from what I've read, the microcapsules release the drug around where the small and large intestine join. Won't do a thing for the rectum, I think. Good luck with Remicade, and here's to your hockey game!

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid