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Crohn's Disease Forum » Treatment » Entocort question


09-05-2006, 09:54 AM   #1
xrayzerase
 
entocort question

hi..
i will be starting on the entocort (3 pills a day) tomorrow morning.
i am a little nervous about when i stop taking this med however. (i will be on it for 8 weeks)
i guess it is better to take it and hopefully put this into remission rather than not take it...but-my worry is it will make it worse after i get off of it...
any advice is appreciated..
(still have a lot of reading to do on this..still new to it..)
thanks
andrea
09-05-2006, 02:27 PM   #2
GNC Crohn's Man
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3 pills a day means you are takin 9 mg of the entocort correct?

You should only feel very minor steriod side efffects from it or maybe even no side effects at all..

BUT as far as MY history with the medcine goes it is only good for ME as a maitence med... If you are having mild-moderate trouble with inflammation now then the entocort should help to clear that up...

After you get off of the entocort the problems may or may not be their again... Thats the gamble with steriods... Sometimes you get healed for while your on them and then you get off of them and your fine... Sometimes you get healed when your own them and then get a another flare (sometimes worse than the first) after you get off of it..

Also do not stay on this (a corticosteriod) or any immunosuppresant (Imuran and/or 6 mp) for more than 6 months to 1 year... Otherwise you can permentaly alter your adrenal gland (from the steriods) or damage your immune system (from the immunesuppresants). Remember these meds help the crohn's but they DO NOT help the body... The only drugs I have seen that don't activly hurt the body are the Meslamine based pills like Pentasa...

So it is a damned if you do and damned if you don't with crohn's meds...
I just make sure I take enough supplements so I can counteract a LOT of the bad side effects from the meds.. But then again I have done the research on all this to determine what is right for me...

Sorry I couldn't be more positive... Just take the pills, eat right, and maybe you will stay in remission... Just don't trust the entocort as your only maitance med... If you do and it doesn't work, your next flare could be a lot worse since you will then have NOTHING holding back the crohn's...

I don't give false hope, but I try to give the facts I know in the most positive manner...

Hope this helps you and you get to feeling better...

Cya later,

Daniel

Last edited by GNC Crohn's Man; 09-05-2006 at 11:54 PM.
09-05-2006, 06:40 PM   #3
Cara Fusinato
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After 6 days on enticort, I wanted to kill people. I was seeing red and was in an absolute uncontrollable rage. Now, if I begin a flare-up, I take it at the rate of 3 pills one day, 3 pills the next and then get off it. My GI Doc. was shocked at my response, but it was very ugly.
09-06-2006, 12:17 AM   #4
GNC Crohn's Man
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Cara Fusinato were you on any other medcines, herbal, or vitamen supplements at that time? Also did you drink or use any kind of pain killers or even recreational drugs? And on meds I'm not talking about just crohn's meds but any med that could effect your brain chemistry at all..

No I do not think your a druggie... I'm just asking the same questions that all the nurses and all the doctors ask...

That is a very very unsual side effect of entocort... As a matter of fact I have never heard of anyone ever having that side effect from it... Then again their is a first for everything...

Also Cara Fusinato have you ever experinced similar side effects while taking the (IV steriods) or while taking prednisone?

Yes I'm a very nosy person... I want to be a doctor one day... But until then I'm just a guy that knows a good bit about crohn's meds, herbs, and vitamens based off of research that I have dug up from various scientfic papers, books on supplements, magazine articles, and by bugging my docs to death with questions..

Feel free to tell me to shut up or go away, and trust me you will not hurt my feelings... My sister-in-law, brother, and Mom have been threatining to kill me my whole life for bugging them with questions LOL... So no I won't feel bad if you tell me to shut up...

The same goes for anyone else here in this forum... As you can see I'm one of those guys that just doesn't know when to shut up until he finds something more entertaining to do...

And no I don't know everything... But, I generally can find an article or report that deals with whatever problem is mentioned... After I read the article I generally remember the majority of what it deals with..

Ok time to go look up unusual side effects of entocort...
09-06-2006, 01:51 AM   #5
GNC Crohn's Man
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If your Mangosteen juice is like grapefruit juice in it's absorbtion process then that may be the reason you are having problems with your entocort... Just a thought...

After extensive intake of grapefruit juice (observed in male subjects taking in 600 mL of concentrated grapefruit juice per day for 4 days), the systemic exposure for oral budesonide increased approximately 2-fold. Grapefruit juice inhibits CYP3A activity predominantly in the intestinal mucosa. As with other drugs primarily being metabolized through CYP3A, regular ingestion of grapefruit or its juice, should be avoided in connection with budesonide administration (other juices such as orange juice or apple juice do not inhibit CYP3A). See Drug Interactions, Grapefruit Juice.
You can read the whole article here http://www.rxcarecanada.com/Entocort...asp?prodid=682

Or it could just be your body just didn't respond well to the med.... Ohhh well just some thoughts...

Last edited by GNC Crohn's Man; 09-06-2006 at 01:53 AM.
09-06-2006, 07:53 AM   #6
xrayzerase
 
hi daniel
thanks for your reply..facts are good-i'd rather have that than not know as much as possible.
i have been trying hard to keep diary of food-and also just avoid things that cause trouble. i am still learning ...it is all very new..so..i am a bit in "clueless mode"
i did have loose stool-and sliighty yellower than the last days (brown with those yellow specks--which i am going to ask my dr about)
the heartburn is a bit better-but-still there.
and also anal discomfort and especially when i "go"-it burns when coming out--formed stool or loose..it burns.
i guess it is still a bit inflamed..and so..i am going to pick up the entocort tomorrow am (he already called it in..i was just hoping to avoid it..was hoping the pentasa was doing enough..) but-this loose stool-and it being more yellow today-makes me think..there is still inflammation..so-i know..just have to take the steroid thing
i will definitely be finding out all i can-more and more-on diet and supplements. i am getting the omega 3's and take a multi vitamin and calcium/magnesium pill. ..and eat one or more yogurts a day now.
i now avoid nuts/seeds etc and some raw fruit w skin and gassy vegetables. but..otherwise..still not sure whats cuases what. i hope that once this "flare up" or whatever it is is "better"-or-in remission..i can have maybe a little more flexibilty with food..but..won't push certain things...and still need to learn a lot about what messes me up.
anyway-sorry for the long ramble..
thanks again
ps: glad you are finding ways to battel your dehydration--i have gatorade here on hand--but-it is awful stuff. i drink a lot of water and kombucha (decaf) green tea with honey.
~andrea
09-06-2006, 07:55 AM   #7
xrayzerase
 
cara:
ohhh...that doesn't sound too good.
i am glad you are getting off of it
will you take prednisone instead? or?
just...good luck
~andrea
09-06-2006, 09:31 AM   #8
boneyboy
 
Yeah teh entocort should say to stay away from grapefruit on the bottle. If it doesn't go to your pharmacy and yell at them. Put that rage to good use!!!
09-06-2006, 10:32 AM   #9
Skinsfan1229
 
Some people expereince NO side effects like me.

9mg is the usual dose for it. I was on it...actually budesinide, another name for entecort, my experience it does great as a maintenance drug, but not getting people into remission.

The reason they made this steriod was because it supposedly has less side effects then prednisone. Prednisone is more potent to a lot of people when flaring. Dont be scared of it either....your flaring, your having a horrible time...there are only CHANCE of slight side effects.
09-06-2006, 07:33 PM   #10
xrayzerase
 
it's not a good drug to use to get into remission??
ohoh....
right now..my biggest concern is putting this into remission...
do you-or anyone else-know what other meds are used to do the remission part? would that be prednisone?
anyway-start the entocort 9 mg day for 4-8 weeks. the stuff is SOOOOO expensive..and my dumb insurance hardly made a dent in helping slough off some of the price...oh well-at least this isnt a long-term one like the pentasa...(so so much to learn....)
09-06-2006, 11:50 PM   #11
GNC Crohn's Man
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xrayzerase in my experince nothing is a good drug to put it into remission... I'm taking Pentasa 500mg pills x2 four times a day... Thats 4000mg of pentasa... I'm also on 60 mg of predinsone a day (30 mg every 12 hours), I also get Remicade infusions every 2 months... All of that is holding the crohn's at bay for now...

When I reach 40mg or lower of prednsione then I might start flaring again.. Or I might not... Their is no set drug out their that works for putting you in remission... It is just trial and error... Sometimes people go into remission on thier own without changing anything.. It's just the gamble you have to take..

BUT be sure to tell your doctor to taper you off of the entocort when your 8 weeks is up... In my personal experince any sudden change in anything may cause you to have a flare up...

I would tell your doc at the 8 week mark when they want you to come off of it to go down to 6mg for two weeks and then 3mg for two weeks... Just to play it safe...

But remember things could always get better or worse at anytime...

So my advice to you is take the pills as directed, exercise (if your body is up to it), eat right, and take the right supplements...

As far as supplements go you generally want to get the time released ones...
Big huge calcium carbonate tablets may cause you to get an obstruction if they don't dissolve... Same with the multivitamens... Get time released on all mineral based pills... That way they will break apart so much better in your stomach and plus they will absorb a lot better... Softgels, capsules, chewables, and liquids are fine too... Some non timed released mineral pills are ok too so long as they have a very low elemental content in them or if they are designed to break apart quickly... DO NOT confuse vitamens with minerals... They absorb differently and break apart differently than minerals...

Also you said
i am getting the omega 3's and take a multi vitamin and calcium/magnesium pill.
If you are having any active crohn's then make sure that calcium is Calcium Citrate it can also be called Calcium Citrate Malate... It is desinged to break up in low acid content stomachs and is very very absorbable... BUT you have to take a lot more of them... Also make sure you are getting plenty of Vitamen D as well... You can take all the calcium and magnesium you want but if your body isn't processing the vitamen D then it is just going to be nice calcium poop...

Corticosteriods (budesnide, solumedral, prednsione) all are procesed in the liver... That is also where a lot of other things are processed such as converting Vitamen D2 to Vitamen D3....

WATCH OUT ON VITAMIN D...

It more than likely will not tell you on the front part of the bottle what kind of Vitamen D you are getting in in your supplements...

Their are only 2 real kinds of Vitamen D a human needs... The first one is D3 (Cholecalciferol)... This is generally added to milk and other food based things... Your body can more or less go ahead and start using D3 for the stuff it needs to do... You will not over dose on Vitamen D3 from food... You can over dose on Vitamin D3 (Cholecalciferol) from supplements though...

Vitamen D2 (ergocalciferol or calciferol) is more or less the natural verison of Vitmen D... This what your body proccess in the liver and basicly converts it over into D3 on its own.. Provided you expose yourself to 15 minutes of sun light everyday... Vitamen D2 that doesn't get converted in the liver is basicly like the calcium/magnesium that doesn't get absorbed... It is nice happy vitamen/mineral rich pooop and pee...

Anyway...

So you should buy a vitamen D supplement that says on the back of the bottle (Vitamin D (as Ergocalciferol))... I take 2 400 IU (Vitamin D (as Ergocalciferol)) tablets a day... But I also have osteopenia and I am on a lot more corticosteriods than you are on...

Ok time for round 2 of valium based sleeping pills. FIGHT!

I have to go to sleep soon or else I'm going to have to stay up... Next prednsione dose is in about 5 hours... But I want to be awake in the day and alseep at night... Ughhhhhh....

Ok gives me more time to post my vitamen babble until hopefully I get drugged up enough to where I can sleep and then wake up and take my prednsione then go back to sleep LOL...

Ohhh yeah today is wednesday... Time for fosamax Yahhhhhh!!!!!
09-08-2006, 12:04 AM   #12
Cara Fusinato
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GNC guy -- to answer -- at the time, the ONLY meds I was taking on this planet (legal, illegal, supplemental, etc.) were 1. Pentasa 2. Enticort 3. Requip for restless leg. Nothing else of any kind (not even birth control or even caffeine -- nothing). The mangosteen juice didn't appear in my life until 3 months after that, either. The Doc. thought it odd, said it must just be me. I am now not taking any steroid. But I have found an alternative treatment that reduces inflammation far more than anything they tried to give me. I didn't just quit. I found a different path. Anyway, didn't bother the nosiness. Just wanted to clarify.
09-08-2006, 07:26 PM   #13
xrayzerase
 
gnccrohn'sman:
wow---this is great info on vitamins---thanks very much
going to print this...
andrea
09-09-2006, 01:34 PM   #14
Kev
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I've got 2 steriod tales to tell, will try to keep them brief (lmao). Here goes:

I got some form of IBD in early 90's, after giving up smoking.. Dr finally put me on 45 days of steroid enemas.. Treatment was a nitemare.. Pain was worse than disease... And mood swings... Go from laughing to crying, w/o explanation... Treatment ended, disease disappeared for nearly a decade...

My dog (beautiful young black lab who was terrified of water - go figure) had a immuno disorder shortly after receiving normal vaccinations. Learned later it was a common side effect for animals who receive 3 part live virus shots. It was called AIHA (acquired immuno haemalytic anemia) and only chance for a cure was massive doses of steroids. (Dogs face looked like fresh hamburg). It worked, but the side effects.. Dog lacked all energy & was totally arthritic.

Anyway, my meager understanding of steroids is that they sort of 're-boot' the immune system... Equiv. to giving a TV that doesn't work a hard smack. Sometimes it works, sometimes it don't.. or sometimes it only works as long as you keep taking them... But the long term typical outcome is that their effectiveness diminishes gradually over time.. meaning either higher doses or shorter breaks (remissions) in the symptoms. But that's just my take on it!!!
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
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