quote:

Can I stay on Entocort long term?

No, it is not recommended. I was on 9 mg which is the maximum dosage for 7 months, combined with antibiotics which is a good combination as far as fighting pouchitis, but a bad combination as far as weakening your body's ability to fight off skin infections. Entocort is an immunosupressant and therefore my body's ability to fend off yeast and viral skin infections was compromised resulting in virulent outbreaks.

So long as you stay on top of the dosage and report to your doctor if anything is amiss you should be OK but Entocort is not really a long term solution.

I agree that you shouldn't look to take Entocort long term due to it compromising your immune system. Just like prednisone your body is going to become dependent on it and stops your body from naturally producing its own corticosteroids. Yes it is not as evil as prednisone because it has way less side effects and also works directly in the small intestine area instead of the entire body to reduce inflammation. You are definitely taking a risk if you are taking it for long term due to viral infections you would have to be extremely careful and wash your hands religiously to avoid getting infected by some type of virus. I don't know what Dr would prescribe it for long term use either as it is usually used as an alternative to prednisone and eventually tapered off of also.

Thanks for your replies.

My Doctor didn't prescribe it long term, I was just wondering if anyone had used it for maintenance.

I am concerned because my UC was never under control unless I was taking prednisone. I worry that that will happen again with this.

Very frustrating. I, like many of you, had this surgery so that I could avoid all of this. I feel like it's back to my UC days - hoping and hoping the next "thing" will work. It's only been 6 months and I have already exhausted the antibiotics and 5-asa suppositories - neither worked.

I hope I can get off the Entocort when the time comes in another few weeks, but I am honestly not confident.

Sorry for the rant...

mom2panda:

Just keep an eye on your skin if you are on the Entocort for a while. The compromised immune system has trouble fighting off the yeast and viral infections that are normally fought off. In my case it hit me all at once virulently, and cleared up soon after I stopped the Entocort.

Your skin is your body's first line of defense against infection and that is where the issues will happen first.

The Entocort DID help me and it can help you, you just have to be careful and judicious in using it.

Hi CT,

Thanks for that. Did you find your skin issues specific to Entocort, or did you have similar issues with prednisone?

I didn't have too many issues with pred, so I was hoping to expect even fewer with Entocort.

Between pred, Imuran, and Remicade, I've turned into a germaphobe anyway. I am vigilant about hand washing and sanitizing. I keep sanitizer in my car for every time I go out in public!

quote:

Thanks for that. Did you find your skin issues specific to Entocort, or did you have similar issues with prednisone?

I had acne and moonface from Prednisone.

I did have skin issues taking antibiotics before I ever took Entocort. This was a result of taking high dosages of cipro and flagyl for too long with no rotation. I broke out with yeast infections and warts in the same area (legpits).

When I had the attack at the 7 month mark of taking 9 mg Entocort with antibiotics, the outbreak was much more virulent. In fact my dermatologist said it was the worst outbreak of warts he had seen in 30 years of practicing dermatology, and he has a very busy practice. He also said he had never seen a patient heal from warts as quickly as I did. Of course, going off the Entocort undoubtedly helped the "healing" process.

My initial experience with prednisone was like everyone else's it made me feel great. When I was taking short doses of it out actually helped clear up any acne I had because it was reducing the inflammatiin so I loved it. It also made me think I could eat anything after coming out of a flare I felt like it cured me when it was only masking the damage I was doing to myself. After I started taking it on a consistent basis it must have absolutely destroyed my immune system because those times when I had success clearing up my skin came to an end. I had the worst case of acne on my shoulders and back I was disgusted to even be shirtless around just myself. I couldn't continue to look at it in the mirror and it was the kind of acne that really hurt. I also had blood spots on my white shirts after sleeping from rubbing on them and having them open up. It was not a good time. So as much as the steroids make you feel good they are doing significant damage that is unseen.

I think short courses of either of these drugs is okay. It is the suppression of the immune system over time which causes things to deteriorate. In my case 7 months of Entocort and antibiotics and then BOOM, a massive downhill spiral in less than a week. It's very dangerous because when you feel good from the treatment, you want to just keep going, and you are not expecting the other shoe to drop on you so harshly like that.

Dr.Shen has had me on Entocort for almost 2 years now. He said it is safe long term.

Long term use will also result in extreme muscle cramping and Restless Leg syndrome.
I have never experienced muscle pain like I do when on Entocort. Be careful with long term use. I have been on it too long and I regret it.
Funny, I have never felt so good and so bad at the same time.
Good Luck

Thanks all.

Pouchomarx, that's encouraging.

I agree sherlock - I've always said I have a love/hate relationship with steroids. Love that I feel better, hate the damage they do.

Just started Endocort today Cipro and flag only worked short term. Cronic pouchitis for about a year also trying vsl3 ds 3 times a day I hope this works

I have used Entocort for 11 days know and it seems to be makeing me feel better.Last knight I slept for 7 Hours straght.
Its been 10 mounths since I have been able to sleep like that.Im not shore how long it will last but ill take what I get
and be thankfull for it hope it keeps getting better IM also taking Vsl 3 ds and Lomoyil .I stay away from sugar and carbs
Ive not had much luck with cip or flag. I agree with mom2panda as far as being back in my uc days. Thats what it feels like.

I am starting endocort tomorrow. Got the prescription tonight. I don't have much help with how to take this. It says take 3 tablets daily. they are 3mg tabs. I live in Southern Maine and went to Lahey Clinic in Mass to a new GI there Dr. Barto. The other day I left a message at 9am - didn't hear back until 7:30pm. *** -> So How do you take your Endocort/budesonide?

I had take down in 2000. have had on and off pouchitis that has become chronic. I am one month Gluten and dairy free and that is helping me a lot. But My pouch is inflamed and has ulcers. I'm trying everything I can do not to take Biologics. But boy are the docs pushing that. Flagyl is not doing the trick nd I'ma allergic to Cipro. My GI inn Maine doesn't know much IMHO.

I take 3 capsules every morning. It is working for me. I was going to try gluten and lactose free to see of it helps tine able to lower the dosage. Good to know it is working for you.

Give the Endocort a few days to a week and hopefully it will work.

mom2panda i think you should try another antibiotic flagyl and cipro known to be problems for many people..

sorry if i do not agree with dr. you could try augmentin,amoxicillian,keflex,tindermax..there is a bunch to try..now there is something called antibiotic resistence but worth trying another to be sure not the two you tried..

Well that was short lived. Bad night dont know what happend Monday night i sleep and last night hellllll.
See what tonight brings going to limit intake.

I just started Endocort yesterday and last night my left forearm was itching a lot and this morning. Looked it up and itching is not a good sign. Will call the GI practice today. I'm bummed if i have to go off this. I'm trying NOT to go on Biologics.

Lucky me, I will pick up my prescription tomorrow and not looking forward to starting this. Had a nice 4 year remission on short course of remi but had reactions to that and besides once you stop you can't restart.