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Crohn's Disease Forum » Treatment » Prednisone/Entocort » How long on Entocort


04-08-2015, 07:08 PM   #1
poopaholic
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How long on Entocort

I was just wondering who all has been on Entocort for long periods of time? And how long? Also if any side effects?
I really don't know exactly how long I have been on Entocort but I think it has been somewhere around 3 years. My doctor has tried to ween me off of it but my symptoms return. Currently I am on 9mg. Also I have been the unlucky one to get the unwanted side effects from the biologics. Imuran gave me pancreatitus, humira gave me lupus and rhumatoid arthritis , methotrexate elated my liver enzymes to high, cimzia didn't seam to do anything. Entocort seams to be the only thing that gives me my life back. Better than predison, it makes me angry and aggressive. Anyway any feedback would be appreciated.
04-20-2015, 02:48 AM   #2
poopaholic
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So I guess I'm the only one. That kinda depresses me, but I'm feeling well and working everyday. I see my doctor on june 1st. He will probably decrease my dose if not just taper me off. He asked me about doing that on my last appointment but I was feeling good, the first time in awhile so I asked if I could just keep my meds the way they were. He agreed. He said he would like to see me have a couple good years without the misery I have had in the recent past. Any comments would be read.
04-20-2015, 08:15 AM   #3
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I just started about a month ago on the entocort. I'm starting to see relief that I havent had in years. Hopefully things keep getting better. I recently asked the doctor not to give me biologics because I've heard so much about the devastating side effects. I'm always in pain, but I feel like that's better than some of the scary biologic stories I've heard. I hope you start feeling better and your doc can wean you off the entocort. Good luck!
04-20-2015, 11:55 PM   #4
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My daughter has been on Entocort for 6 weeks. The plan is for her to stay on it until Remicade kicks in, and then taper off it. So far, she isn't having many side effects from either the Entocort or the Remicade.

I don't think the Remicade is doing much for her yet; I think she'll need a higher dose to see a real effect. In the meantime, our GI has said it's fine for her to stay on the Entocort for as long as she needs to--that she has patients who have been on it for years without problems. So maybe it's not the worst thing for you to be on it long term, especially if you can't tolerate other treatments.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-21-2015, 03:06 AM   #5
AJC - Australia
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hey poop
i was on entocort for years…..years and years.
took me 2 years to get off it.
it was really hard to stop.
i have written about it several times on here, wish i copied and pasted it so i could send to you……..long story short, when you get off it the symptoms will feel like they are coming back…..taking entocort (cortisone) sort of tells your body to stop making certain hormones……my understanding is that cortisol is naturally made by the body….by replacing that with tablets your body stops making it naturally…..so, when you stop taking the tablets it takes a few weeks for your body to re ignite and start making cortisol at the right levels again…..does that make sense?

get a bone density test.
entocort eats away at your bones.
it is not a long term choice.
my teeth started to get loads of holes in them, from taking entocort for years.
like 8 years.

you have to get off entocort like it is a science.
you can expect headaches, gut cramps and all sorts….
sorry to be the bearer of that news.
took me two weeks of headaches and crappy tummy to get off entocort properly.

i tried a dozen times before then….every time i would get to day 2 or 3 and it felt like the symptoms were coming back….i would take entocort and feel well again. Eventually i pushed through that 2-3 to 4 to five day mark and the headaches were horrid. the guts were terrible because the gut NEEDS CORTISOL.

i hope that helps and wish you well getting off it.
you need to get off it.
it will destroy your bones and organs long term.

cheers from australia
04-21-2015, 09:11 AM   #6
poopaholic
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Thank you all for the replies. Actually I did get a bone density test and it showed that I already have osteopenia (sp). So since then I have been taking calcium everyday. So hopefully that helps.
05-03-2015, 02:54 PM   #7
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After reading this thread I am looking at the bottle of Entocort on my desk and really wondering if I should even try to take it for one month.

I am not all that bad, I do have a life I can manage most days, the pain is manageable and I am worried to add more problems to what I already have.

The worst problem the docs seem to think is that I have lost about 38 lbs since Jan. 1st, it is good I needed to. I have lots of energy and they are taking blood tests every two weeks.

Should I do it now while the symptoms are not debilitating, or should I wait till the symptoms are bad? I keep asking myself this.

Anyhow, on Thursday I am having an MRI to see if anything else is amiss, I at least will wait for those results before I start.
05-03-2015, 05:31 PM   #8
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I found this forum when looking for "reasonable" prices for Entocort. I have had microscopic colitis for several years. And was on Entocort for years. My colitis went into remission for quite a while. I got the flu this March and it triggered the colitis again. It's amazing how very little information there is about this IBD. Lucky for me, I had quite a lot of the generic, Budesonide left, so with the gastro doc's blessing, I started taking them again. Now I'm out and the pharmacy wants $1450/90 day supply!! REALLY?! I'm slowly melting--lost 16 lbs. since March, which I needed to lose anyway. But I certainly can't afford $1450! Does anyone have any suggestions?
05-03-2015, 06:13 PM   #9
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I took it for 10 months and weaned off when I began Humira. But I am back on it again, two months in, along with other meds. No real MAJOR side effects, except for some facial hair which drives me absolutely batty. Head aches as well. But i have so many symptoms of different things I can't tell which comes from what med. Hoping I can get back off it...I thought 10 months was a long time. :/
05-03-2015, 06:29 PM   #10
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I found this forum when looking for "reasonable" prices for Entocort. I have had microscopic colitis for several years. And was on Entocort for years. My colitis went into remission for quite a while. I got the flu this March and it triggered the colitis again. It's amazing how very little information there is about this IBD. Lucky for me, I had quite a lot of the generic, Budesonide left, so with the gastro doc's blessing, I started taking them again. Now I'm out and the pharmacy wants $1450/90 day supply!! REALLY?! I'm slowly melting--lost 16 lbs. since March, which I needed to lose anyway. But I certainly can't afford $1450! Does anyone have any suggestions?
OMG I can't believe the price you quoted.

I live in Canada, and being over 65 my prescriptions are based on a sliding scale depending on income. I pay $4 for up to 3 months.

Sometimes contacting the manufacturer can help get some for a lot less, I have know people to do that and they did get help.

Good Luck to you, can't believe what you have to go through.
05-03-2015, 06:33 PM   #11
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I took it for 10 months and weaned off when I began Humira. But I am back on it again, two months in, along with other meds. No real MAJOR side effects, except for some facial hair which drives me absolutely batty. Head aches as well. But i have so many symptoms of different things I can't tell which comes from what med. Hoping I can get back off it...I thought 10 months was a long time. :/
I am something like you, I am also Celiac and allergic to casein in dairy and have deteriorating disc disease and Asthma. I did have high blood pressure but now since losing I have the opposite problem, low BP.
05-03-2015, 11:17 PM   #12
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I've been on Entocort (along with ther Meds) for well over a decade. No real noticeable side effects. My doc says it outweighs having another surgery or using prednisone.
05-04-2015, 09:02 PM   #13
AJC - Australia
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I've been on Entocort (along with ther Meds) for well over a decade. No real noticeable side effects. My doc says it outweighs having another surgery or using prednisone.
i felt the same…until i had a bone density test……… highly suggest getting one, if you have been on it for ten years.
05-04-2015, 09:32 PM   #14
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i felt the same…until i had a bone density test……… highly suggest getting one, if you have been on it for ten years.
I appreciate the advice. I just emailed my GI doctor and requested he order a new bone density test, it's been about a decade since I've been tested.
The problem is, I am dependent on the Budesonide, if I quit it, I'll be headed for surgery no doubt.
I'll keep you posted on my bone density results.....
05-06-2015, 06:08 AM   #15
AJC - Australia
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you might think you are dependent on the budesonide or as they call in australia 'entocort'……..but you might not be. That is how it turned out for me. It is addictive, your body needs it and when you cease it, your body freaks out…….if you stopped taking it suddenly, just ceased it - you would get headaches, sweats, pains, fevers, gut aches, loss of appetite and all sorts - because your body is physically used to not making cortisol…….and your body NEEDS cortisol for a lot of stuff….that is my amateur understanding of it all. The other thing to remember with budesonide is that it changes your moods……..if you get off it and stay off it, you will look back on your 'budesonide life'…..before and after…..i cant remember what I was like, i was off my head most of the time!!!!! 'cortisone kid' from age 22-28.

EVERYONE IS DIFFERENT

WE ARE ALL BATTLING OUR OWN DEMONS AND ISSUES.

ONE SIZE DOES NOT FIT ALL.

get well everyone
05-06-2015, 02:06 PM   #16
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I took Entocort/Budesonide for two years starting in 1996 when it was very new and the thinking seemed to be that not being systemic that you didn't need to worry about the side effects.

While I experienced less severe side effects than with pred, I still had the chubby cheeks, weight gain, mood swings and I stopped menstruating while on it (aged 18-20). I was really eager to stop and once I'd done a course of EEN my new GI was happy for me to taper. Fortunately I didn't struggle too much with the taper and felt so much better to not be dealing with those side effects in addition to Crohn's. In my case it didn't seem to do a lot for my disease so it was great to come off it and I've avoided steroids since.
05-06-2015, 02:11 PM   #17
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I have been steroid dependent for a long, long time. Seems my GI thinks it's preferable than to taking out more gut. I'm scheduled for bone density scan 5/21. We shall see. I do take calcium, vit d. I exercise (lift and walk/jog), but not sure if that's enough.
06-04-2015, 07:01 PM   #18
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i felt the same…until i had a bone density test……… highly suggest getting one, if you have been on it for ten years.
Good news, just got my bone density test results and it was normal! So happy to hear, I was concerned. My last test was done 8 years ago.
I am still on Entocort and will be for the foreseeable future. But I make extraordinary efforts to maintain bone density with diet, weight lifting, walking and supplements.
06-04-2015, 08:36 PM   #19
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I would like to thank everyone for their answers, it was enough information for me to not take Entocort at this time. In a way it is good as my family doctor just doesn't let go as he thought there was something else going on.

Apparently I have a large tear in the abdominal wall on the left side which is not visible in ultal sounds, CT Scans and an MRI because I was lying down. This time, at a new facility they made me stand up to do the ultra sound and it was clearly visible.

The results were sent to him today and they are arranging other tests and a referral to a surgeon.

Will be back to read later, I have not been here for a while, bum computer and not too swift me.

Take care everyone.
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