long-term entocort

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btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/10/2009 7:40 PM (GMT -6)   
Hello All,

I have a question for everyone regarding long term use of Entocort. I was diagnosed with Crohn's Disease 3 years ago and the only medicine that seems to work is Entocort. I started out with the recommended 3 pills a day but then tapered myself down to only taking two (3mg) pills a WEEK! I've been on two pills a week for close to a year. I am beyond thrilled with the results. If I start to feel a flare, I take a pill (if it's my skip day) or if need be 2 pills. And it keeps it at bay. My goal is to get down to one pill a week and possibly none. I'm so scared that things will get worse though that I'm scared to take that next step.

My question is, has anyone ever successfully come off medicine completely and used it only when necessary? One day, I hope to get pregnant and I want to be off the medicines - if possible of course. I'm worried about the long-term side effects of the Entocort but my doctor assures me that 2 pills a week won't cause any harm.

Can anyone share their experiences with long-term side effects of entocort?

Your help is much appreciated :)

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/10/2009 9:16 PM (GMT -6)   
I mean there are people here that claim to use just diet, but I believe those tend to be people that have it mildy to say the least. And theres really no point in taking 2 pills a week, because all that means is 2 days you have it in your system and 5 day you dont...it doesnt build up like that as far as I know. Does your doctor know your doing this? a majority of doctors recommend not completely taking nothing, if only asacol or pentasa, for maintenance. The reason Entecort or the other name budesinide came out is because people cant handle the side effects of prednisone, which many dont have any side effects what so ever, but the entecort has very few side effects. Whats your deal with not wanting to take it? Do you just not like man-made medicine or do you not want to take steriods or what? You could be taking asacol and it rarely causing side effects or problems.

Everyone experience is going to be different, but Im going to tell you right now that Id be surprised if you got 1 or 2 positive answers toward any steriod. Its like the medication Oxycontin, its got a stigma. Then there are people like me that its my savior, it helps me everytime, i may have to be hospitalized along with it but it still works. Its a great medication to stop a flare or for people who dont respond to other things. Why not ask your doctor about biologics if you dont want to take a pill? Remicade, Humira, Cizmia, Enbrel, methotrexate, Imuran? like Remicade is a IV infusion, takes about 2 to 2 and a half hours and is only onces every 8 weeks on average, although some doctors like to do a sort of loading doses type thing and the first ones be every 6 and then change to every 8 weeks.

You should specifically make a post for anyone who LIKED entecort or Prednisone....because this post is going to be filled with 'naysayers' lol I promise you that. People can never vent enough when it comes to steriods it seems.

This is the way I look at it, I have severe crohns disease, if i'm not going to take a steriod because of possible long term effects that might not even happen then I look at it like then the disease obviously isnt that bad. If Crohns disease is bad enough I feel people would take whatever thy have to. THATS my pet peve and waht IIII need to vent about when it comes to steriods lol. (not trying to down anyone or make them upset or start any controversy please, just my opnion, and you know what they say about opnions...but then again thats not even a true saying because i have no butthole lol!

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/10/2009 9:45 PM (GMT -6)   
The only real long-term danger of long-term Entocort use would be the osteoporosis from what my doctor has told me.Are you taking vitamin D and calcium supplements? Also, like the post above me said, I thought that you had to take it every day for it to really make a difference... I could be wrong there, but that's the impression I've always had. I've been taking 9 mg/day for about 6 months now, still not in remission but my doctor told me it could make me up to a year :/

btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/11/2009 8:31 AM (GMT -6)   
Thanks for your reply! I know it was an open ended post.

My doctor is fully aware of my two pill a week "habit." He suggested it. According to my doc, just having something in my system can keep it at bay. Not always, i still have some horrendous days where I bump it up but the less horrendous days outweigh the bad ones. Call it a mild case - for now at least! I know I'm extremely fortunate.

My doctor wanted to see how low my body would allow me to go on Entocort without causing a flare. He's a big hater of steroids but this was the only drug that seemed to work. I tried Pentasa twice to only have a severe flare both times. 6-MP sent me to the hospital for a severe reaction. I've only been on Prednisone once when I was first diagnosed. It sent me right into remission. So, the lowest dose possible of entocort would ease his mind and would mean fewer long-term side effects. My next step was the infusions/injections but he thought those long-term side effects would be worse than if I could get myself low enough on the Entocort. I've just never spoke with anyone who took it longer than a year - and I'm definitely going on 2 now! So, it weighs on my mind. When I began my taper, my body revolted. It was a slooow process just getting down to 1 a day, then 6 pills a week, 5 pills a week etc. My doctor said some of his patients who are in remission can get by with doing this. Going off medicines completely - even my piddly two a week - scares me. But I wonder, can it be done? My deal with not wanting to take it, is because of the long-term side effects. I'm only 26. Am I going to need a hip replacement in my 30's b/c my bones are so brittle?

I'm like you, CrohnsPatient, I believe if it's really bad, take whatever will make it easier to get out of bed in the morning. Heck, I don't even like having a cold without getting antibiotics or a nasal spray haha. I LOVED prednisone. I never realized how sick I was until I went on that drug. But, I want to get pregnant - one day. And I like my hips haha. And all these these naysayers and doctors fear steroids like the plague and it gets into my mind that I should hate it too and try to get off them.

Valerie, I don't take vitamins :( I know, I probably should! But, I like the "man-made drugs!" But if it will ward off osteoporosis then I will.

I'll go through old posts regarding diet and pregnancy and see what other people said about both.

Thanks for your help.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 8/11/2009 8:48 AM (GMT -6)   
If this is working for you, then I say why fix it if it isn't broken. But.........I would highly suggest that you take a Calcium supplement with Vit D. Not only because you are on a steroid, but because you are a woman and we ALL need this Crohns or not.

By the way, many women on this site have been on Prednisone, Entocort, Remicade, Imuran and Humira during pregnancy and all have produced healthy babies. Many docs believe its better for the baby if Mom is healthy.

Good luck!
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

aipgirl
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 8/11/2009 10:54 AM (GMT -6)   
I was on 9mg Entocort for about 2 yrs and did extremely well, then all of a sudden I started to develope extreme anxiety symptoms. Once I weened myself off of them the anxiety went away. I tried to reintroduce myself to Entocort a few months later but the anxiety started to come back and I had to stop taking it. It's a shame, too because it worked really well for me and I wish I could take it again! I was also taking a calcium supplement with it.

I have never been completely without meds, though.  I am on 6mp, but I felt much better on the Entocort.(aside from the anxiety thing)


40yo female 
 Crohn's dx: about 3 yrs but been sick for about 9 years.  No surgeries.
Have sister with crohn's dx 25+ years.
 
Currently on 100mg 6mp and miralax
tried remicade but could not tolerate

Post Edited (aipgirl) : 8/11/2009 10:18:21 AM (GMT-6)


btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/11/2009 11:27 AM (GMT -6)   
Hmm it's interesting that you say that about Entocort, aipgirl. I too find myself more anxious but I always assumed it was the Crohns - not the medicine. I don't know why I never stopped to think that this might be the entocort. Excellent point.

My doctor prescribed me Loraxepam but I'm anxious to even take that! haha I'm worried about getting dependent on it. If I'm feeling really anxious about something, I just go for a run or a walk. It helps me get out of my head for a while. The focusing makes it so much worse - as I'm sure you know.

I'm sorry the Entocort worked well but the anxiety took over. Hopefully, the the 6mp is working well for you!

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/11/2009 11:36 AM (GMT -6)   
Actually Crohns does give a lot of us anxiety or even depression. Its hard to deal with disease, things happen, complications come up, even multiple surgeries, they weigh on our minds. Ask your GI he'll say this same and explain it more, I believe its actually quite a large amount of Crohns or IBD patients have some form of anxiety or depression, I believe there might even be a post about this from a long time back or so.

I'm taking Prednisone not entecort which is assumed to be harsher on your body. I take the vitamin d and calcium everyday just to give me a little extra because of the steriods. I took it at high doses for the frist 2 or 3 years, I was also have different biologics at this time. I've never really come off prednisone constantly, but for about a year and a half or longer I've been taking like 5mg unless I start to feel bad I might go up to 25mgs or even 40mgs for just a little while and taper down.

MagsGuts
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/11/2009 11:45 AM (GMT -6)   
Nice thread. I've been maintaining on Imuran and Asacol, and luckily I think I have a mild case. I'll have to ask about just going down to Asacol, because I'm in the same pre-preggo med debate.

Thanks all,

Maggie

Diagnosed with Crohn's 11/07 150Imuran Asacol 4x/day, prenatals and calcium. Flare free for almost 2 years!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 8/12/2009 10:28 AM (GMT -6)   
My daughter has been on Entocort with no break for three years. For more than the last two of those three years, only one pill a day (3 mg).
 
One doc asked, "Has the [one pill of] Entocort stopped Crohn's dead in its tracks?" -- the subsequent colonoscopy revealed it had not.
 
My daughter is much improved, due to Entocort and diet, but we want to stop Crohn's completely - the danger of Entocort is that it allows slow, continued, deterioration to take place.
 
I've seen posts saying Entocort worked at first, but then petered out. In my opinion, this is probably because the Entocort allowed the the damage from Crohn's to increase to the point where Entocort could no longer help.
 
This is why she is searching for an alternative long term solution - right now, is in her fourth week on LDN and still taking that one pill of Entocort.

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 575
   Posted 8/12/2009 1:09 PM (GMT -6)   
Entocort is "SUPPOSED" to be safer than pred. It is not supposed to get absorbed into the bloodstream. It is meant to stay inside your intestines, and work there.

Pay attention to the little gel capsule it comes in, notice you cannot break the tablet up, or do anything with it, that is where alot of the technology is at. Also look at the little beads inside the capsule, take one apart if you like, just don't use it, flush it down the toilet after you are done playing.

For me, it did get absorbed, and I saw the same side affects I see from prednisone. They were no where near as severe though, but it did not work for me as well as pred does either.

Good Luck
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Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 8/14/2009 1:59 AM (GMT -6)   
I find it hard to believe that taking 2 tablets of entocort a week is having any effect on crohns in my opinion - i don' think thats in the prescribing guidelines - my dr was big hater of steroids too - but at the same time they are the one drug that will have an effect on the majority of patients - i got worse steroid side effects off it that pred - but i think its more that entocort did nothing for my crohns & i was just really sick on it.

also i was told that there was no danger of long term entocort use - oh its far safer than pred - well I have borderline osteoperosis from it - despite exercise & calcium supplements - be very wary of this. also there is a pretty high chance its affected my adrenal glands - so if withdrawing after long term use make sure you get your adreanal function checked - the symptoms are pretty similar to a crohns flare. long term use of any form of steroid has side effects - but they can be dealt with if your doctor keeps an eye on them

i dont think you should be on entocort if your crohns is mild like the others say you should be on some other maintenance med - in my opinion a steroid is not a maintenance medication for someone with milder crohns - ok if your crohns is on the severe end of the scale you need it - but the ultimate goal of drs should be to weane off steroids - they are for flares - for a dr that doesnt like steroids hes over relying on them a bit.

re: slow, damage & on entocort - totally agreee - that happened with me - my dr tried to tell me i had mental problems though - needless to say i changed dr & found out i have severe inflammation - & i had several bowel obstructions on it to & didn;t realise
 
 

Post Edited (Wild_Swan) : 8/14/2009 1:04:01 AM (GMT-6)


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/16/2009 11:49 AM (GMT -6)   
What exactly are the adrenal gland implications of using entocort or other steroids?
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/16/2009 11:57 AM (GMT -6)   
I don't believe that 2 pills a week would change anything either... In my opinion, you're feeling exactly the same as you would without taking anything. It even says in the prescribing information for Entocort that there was no difference between a placebo and 3mg/day. You need to take at least 6mg/day to have any sort of benefit.

Mitzo - http://en.wikipedia.org/wiki/Adrenal_insufficiency Read that if you want, but basically, your body stops producing steroid hormones on its own.

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/17/2009 11:42 AM (GMT -6)   
I was on Entocort for several years and then it just stopped working for me.  That was when I had to do my first course of Prednisone which didn't end up being as bad as I was expecting. 

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Vancocin HCI 125mg, 4xday for C-Diff, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone, Flagyl & Entocort


btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/17/2009 5:50 PM (GMT -6)   
Valerie, do you have a link for that prescribing info where it says the 3mg is similar to just a placebo pill? I'm interested in what my doctor has to say about that!! I found the below info where it said:

DOSAGE AND ADMINISTRATION

Active Disease

The recommended daily dose for induction of remission is 9 mg, administered once daily in the morning, for up to 8 weeks. The dose should be taken before meals.

Maintenance of Remission

The recommended daily starting dose for the maintenance of remission is 6 mg, administered once daily in the morning before breakfast. The maintenance dose should be kept as low as necessary for control of disease symptoms.

So, the lower the better until symptoms start to emerge. That's been our plan of attack. If I start to get sick I up the medicine until I'm stable again...then taper and repeat.

btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/17/2009 6:13 PM (GMT -6)   
whoops! didn't mean to bold! sorry about that

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/17/2009 7:17 PM (GMT -6)   
Btm - of course! Read this pdf file, it's on page 2. http://entocort.com/PDF/ENTOCORT_PI.pdf

Basically, with Entocort, if you're not in remission (have any symptoms or pain), you should take 9 mg, then go down to 6 mg after.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 8/18/2009 3:56 PM (GMT -6)   
That one pill of Entocort is still powerful. When my daughter tried to taper off that one pill, she landed in the hospital. And this was even with a slow taper: taking it every other day.
 
The clinical trial does indeed show no sustained benefit for taking 3 mg (after up to 8 wks at 9mg and 12 wks at 6 mg), but please remember this is the average finding and does not apply to every single person. And especially not to people trying diets like SCD.
 
I'm not advocating the use of Entocort - just want to make it clear this is a powerful med, which is why the maxium dose is only 3 pills. Even the one pill has, I believe, been found to cause adrenal suppression...I thought I saw this somewhere but can't lay my hands on the study just now. 
 
 

btm013
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 8/18/2009 7:04 PM (GMT -6)   
What does SCD diet mean njmom?

I know some people in the posts think that two pills a week isn't doing much but I feel like it does! I notice a difference on my skip days versus my pill days. It could just be in my head but there's at least something in my system. Yes I'd prefer to take it all the time and feel 100% but I've been blessed to be able to manage with just a few a week - depending on how I feel I'll take more. I'm just scared of the side effects. Yes the goal is to feel fine today but who wants a hip replacement at a young age, or diabetes or glaucoma later on?! The future can be scary not only with a disease like this but the powerful drugs we need to take just to get through today!!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 8/19/2009 3:59 PM (GMT -6)   

SCD means "Specific Carbohydrate Diet" -- more info on it can be found at:

www.breakingtheviciouscycle.info


cindersue
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/29/2009 1:47 PM (GMT -6)   
Hello btm013. I read your questions about only taking 2 Entocort for your problem and then I read people not believing that only 2 can work. Just take what works for you and don't listen to the others. They are not in your body...they don't know. I just started taking Entocort for only 2 wks. And during this time I have been reading up on this drug. Yes it is better for you than other steroid products because it only gets absorbed by your intestines and not throughout the rest of your body. But I also found out and confirmed with a doctor that it also suppresses your immune system, it says to stay away from sick people...also says you can get the flu and sinus infections easily by taking this medication..due to the fact that it weakends your immune system. I read all of that and it all scared me. We don't need our immune systems to be weakend, we spend a lifetime trying to build it up when we are healthy yet alone when we are sick with Crohn's or other types of Colitis. Anyway, so I started taking only one a day...every other day. In fact I only took one a day 2 wks ago when I started..and within 2 days it worked. I had diarreah for over 10 months every morning of my life 5 to 7 times a day. So mine was pretty severe. And yet only one a day took it away within 2 days. Just had to tell you my story so you know it is ok to cut back on what you are taking and eventually wean yourself off of them. Entocort has only been around for 5 yrs. So as far as longterm usage...we are all Ginnie-Pigs....for others in the future to know what happens. Sad...but it is a fact. Good luck to you and hope your problem goes away and you lead a healthy life!

Harley Rider
New Member


Date Joined Oct 2009
Total Posts : 9
   Posted 10/7/2009 9:32 PM (GMT -6)   
I was on Prednisone for quite some time when I was first diagnosed and the side affects for me were terrible. Anxiety attacks were bad. I didn't know that I should take vitimin D and calcium suppliments to off set the steriods and ended up having to have all my teeth pulled due to the calcium breakdown caused by the steriods. I have mild artritis. My Dr. decided today to put me on Entocort until I find out if I will be getting laid off from work or not. I believe I have mild to moderate Crohns and I'm hoping that I will only have to take it for awhile. She would like me to start on Remicade or Humira, but I'm hoping to avoid any off the big boys.
Hopefully Entocort will work.
Diagnosed with Crohns in 1986. Have never had to have surgery yet.
Have the support of my lovely wife of 30 years who makes sure I stay on the right path.

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