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Crohn's Disease Forum » Treatment » I got Endocort!!


09-25-2010, 05:30 PM   #1
Cat-a-Tonic
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I got Endocort!!

Still no diagnosis and still no pill cam results for me, but I finally got Endocort! I'm going to take my first dose first thing tomorrow morning since the pharmacist said it can make you kind of "wired" like pred can, and it's evening here so I don't want to take it now or I'll be up all night. But I just had to tell everyone about it, I'm so happy!

See, when I talked to my GI's office last week, his nurse told me that they don't want me to go on Endocort until after I get my pill cam results back, which is going to be about 3 more weeks according to them. Also, I was fairly sure my insurance wasn't going to cover Endocort, which I understand is over $1000 per month if it's not covered, so my GI would have to go through an appeal process to try to get me Endocort for a reasonable cost, which of course would take even longer. So I was not happy about all that!

So I told my GI's nurse that I'm having some symptoms now and that it's been hard just to make it through a day of work and I really need something, be it pred or Endocort, just so I can get some relief and make it through the day. The nurse talked to my GI and they agreed to start the Endocort process that day - I think that was Thursday.

I just got a call from my pharmacy that my prescription's ready, which was puzzling, because I thought the process would take a lot longer. It ended up costing me $75 for a month's worth of Endocort - there was a little note on the prescription that said "you saved $1112.99" so I'm happy it was only $75!! And I've got 2 refills available which means I get to be on Endocort for 3 months total. Hooray! I finally get to have some relief! I am so happy! Just had to share that with everyone!
09-25-2010, 05:41 PM   #2
Dexky
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I hope it works for you Cat!! You saved $1112.99!!! That was soooommmmeee sale they were having!! . Good luck!!
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09-25-2010, 05:43 PM   #3
Cat-a-Tonic
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Thanks Mark! It would have been only $10 if they would have put me on pred but my GI doesn't want me to go on pred for any longer than 2 or 3 weeks tops, since it is so harsh and I still don't have a diagnosis yet, but he was comfortable doing a 3 month run of Endocort, so $75 is still reasonable for that. Certainly better than $1112.99!
09-25-2010, 05:47 PM   #4
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Yay~!!!! . I know Entocort is not cheap, and it is milder and way less side effects that Pred. I am assuming you are on the 9mg? Which if I remember is the 3 capsules. I hope this works for you. God knows you have been strung along long enough. Good luck hope it works. I dont remember it making me hyper. Take it all of it when food in the morning. Just remember though it may take a bit to work, everyone is different but it isnt like Prednisone where it works within days. Keep us posted how you do on it!
09-25-2010, 05:51 PM   #5
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Yep, 3 capsules, 3 mg each, so 9 mg total per day. Good to know it doesn't work right away like pred - I clearly remember that I felt the effects of pred within about an hour of taking the first pill, so I'll make sure to be more patient with Endocort. I'll let you know how it goes!
09-25-2010, 05:52 PM   #6
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Woohoo, good for you Cat!!! I hope it brings you some much needed relief.

:mbh:

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09-25-2010, 06:00 PM   #7
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Yay! that's great news Cat. I'm so looking forward to seeing how it goes for you!
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09-25-2010, 06:22 PM   #8
rottengut91
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Great news Cat, my neighbor from above!!!
I've been following your story, so glad you're getting a chance at some much needed relief. Hope you have good results.



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09-25-2010, 07:20 PM   #9
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Yahoo!! Totally happy for ya!!
09-25-2010, 09:58 PM   #10
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I recently started the Entocort too. I believe you should take all 3 capsules at the same time, correct? I take mine with breakfast. To be honest, I don't have too many symptoms to start with (although my Crohn's is considered severe) and I don't know if it's really working or not. I am not taking much Immodium anymore so, maybe it is?? Otherwise, no side effects at all! Good luck! Let us know how you are feeling!
09-26-2010, 04:26 AM   #11
bushydougie
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Huzzah!! That's great news Cat. I do hope you get relief soon as the tablets start to work. Is it also a steroid? I don't know anything apart from what you've posted about Entocort.
You must feel so relieved that there is no battle with the insurance company to deal with on top of everything else
09-26-2010, 07:02 AM   #12
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Lets hope you get some relief soon then Cat!
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09-26-2010, 07:22 AM   #13
Cat-a-Tonic
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Thanks everyone!

Pamywyner: Yes, 3 pills a day, all 3 taken at the same time. I'm supposed to take them with food but I am not a breakfast person, so I drank 1/2 an Ensure and swallowed my pills with that. I just took them about 30 minutes ago so way too early to tell if they're having an effect, and like Pen said it might take awhile for me to notice an effect. Good to hear that you haven't experienced any side effects, I hope I don't either!

Sam: Yes, it's a steroid like pred, but it only affects the intestine instead of the entire body. It supposedly has way fewer side effects than pred does too. I felt good on pred so let's hope this works well too!
09-26-2010, 08:55 AM   #14
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Hurrah Cat!
At last, a bit of relief whilst you're waiting

Entocort is ok, only a 10% derivative of Pred, they're both corticosteroids tho, but milder and less side effects than Pred. Still take it early in morning tho, cos it can/may give you insomnia.
good luck
xxxx
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09-27-2010, 05:31 PM   #15
4peace
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Im also on Entocort. Be patient with it. It took about 3 weeks before I really started to feel a difference. Funny thing is...now I'm slightly "plugged up". Usually I'd rejoice, but I'm not sure which is worse now...having to always visit the bathroom or not needing too! lol. I have felt a little "cookoo", since starting Entocort. Memory and energy both zapped. Let me know if you feel the same after a few weeks. I'm curious to see if its due to medication or not.
GOOD LUCK!!!!!!!!!!!!
09-28-2010, 03:23 PM   #16
Cat-a-Tonic
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Hi 4peace. How long have you been on Entocort? I'm on day 3 of Entocort now, and I haven't noticed anything major, but I think my appetite is slightly better and I feel like I have a bit less fatigue. I had a headache yesterday & this morning, but not sure if that is a side effect or if it was just a headache (it felt like a sinus headache, but I usually get those on the right side and this one was on the left, so I don't know). Do you get headaches from Entocort? If so, what do they feel like? Mine was like a sharp pain above and behind my left eyeball.
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