Entocort Dependent (Help)

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Mychelle

Joined
Feb 7, 2014
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I was diagnosed with Crohn's/Colitis February 2000. I started taking Pentasa until 2011. I started taking entocort off and on for about the last two years. I am currently on Entocort, Humira, and Methotrexate. I must be steroid dependent because each time the doctor ween me off the entocort I flare again. It seem like the Humira and Methotrexate is not working. I recently had a antibodies test and it came back negative. I also had an MRI enterography and no signs of Crohn's or partial blockage was seen. I have painful diarrhea and running to the bathroom anywhere from 8 to 12 a day. The doctor thinks it could be colitis.
 
How long have you been on Humira and methotrexate? If you are dependent on the steroids the other drugs are not helping enough and maybe a new one should be tried. You can't stay on steroids too long so it's best to try another maintenance therapy.
 
mychelle….i was in the exact same boat!!!
good news - your gut problems, even though they appear the exact same as crohns, it probably isnt crohns. It is cruel the way cortisone dependency makes your guts feel that way. I remember it all too well…i took entocort for longer than you - and i mean years.
I would get down to one tablet a day and then one tablet every second day and then i would feel terrible. no appetite, gut pains, no energy and of course - the runs. It was like the crohns had come back, so i went straight back up to 3 tablets a day (40 odd mg) and bingo i felt well again and assumed the entocort was keeping the crohns at bay.
WRONG.
What was happening is that your body needs the cortisol to help with hormone production and things in the gut…your body gets used to you taking the oral cotisone and it ceases making the stuff naturally….but you need it for healthy digestion!
SO…your guts start causing you problems….pain, the runs, etc.

MY doctor, bless him - he basically said that i needed to push through the withdrawal, to expect the problems with the guts and expect it to last a while, like a few weeks!

SO - i finally got down to one tablet every 2 days for a week and then i stopped.
I had SEVERE headaches for about two weeks and took painkillers every day.
I had no appetite and the runs…gut pains, but not chronic pains like crohns can be.
The whole deal lasted about 3 to 4 weeks.
Then the headaches went away and the guts started to get better and my appetite came back! I havent taken cortisone since and i am determined to never take it again, because my body was addicted. I still have it as a pre-med with infliximab every 8 weeks and it messes me up for about 3 days.

SO- i hope you can persist.
You probably need time off work to do it and you need to be determined.
My determination came from knowing my bones were thinning from long term use.
I just had to get off the stuff.

Good luck Mychelle - i think you are in for a heavy few weeks - but then you will be FREE AGAIN!!! Humira and methotrexate are a good combo….you wont know yourself when you get off the cortisone too….you will be much more enjoyable to be around.

good luck gurl.
 
nogutsnoglory and happy poo poo; Started Humira 40 mg bi-monthly, November 2012; Increased dosage of Humira 80 mg bi-monthly, April 2013; Started Methotrexate 25 mg weekly. Gastro doctor ask did I think the Methotrexate was helping and I said no because it seem like the entorcort is working because every time I would wean down to 3 mg every other day my gut feels like it is on fire. My doctor never totally explained everything to me and I am beginning to wonder how much he knows about treating crohn's disease because when he started me on Methotrexate he did not prescribe folic acid and I was nauseated. He gave me Zofran but that did not work as good without folic acid. I kept calling him about being nauseated and he finally discussed with some of his colleagues and call me and told me to start using folic acid. He apologized to me about that. However, I was very sick to my stomach and I did not want to continue using Methotrexate.
 
If you have been on them this long and see no difference I question why your doctor keeps you on them. There are other drugs to try that could get you off the steroid.
 
I have been having a horrific time getting off entocort. I started taking 9 mg daily in August. After starting Humira on December 18, and being on about a month they had me start to wean. As soon as I went down to 6 mg it was pure hell. I had the worst headaches and behind my eyes felt like I was having a seizure. Terrible migraines, etc. I would also get very dizzy, uncomfortable chest pains from indigestion, and bad stomach pain etc. When I finally leveled out at 6 mg they told me not to go any lower yet because of how sick I was. So I stayed at 6mg about another month. Then the dreaded taper again. I then started doing 3 mg, then 6 mg every other day. I have done that about two weeks. Last night I dropped down to just 3 and today had a terrible attack tonight. :(

I'm always afraid I am having a heart attack when I have the bad stomach because I get chest pains as well, weird cramps sometimes, and get very cold, even blue lips sometimes. I have told Dr's continuously and they seem to think it is all just part of the crohn's. :/ But it still scares the crap out of me.
 
good luck CKoenig…wont be long now and you wont need entocort anymore….it was good while it lasted though! Much easier on the body than Prednisone. Good luck with the last hurdles….as outlined above, it can take weeks of pain and feeling ******, you just have to take time off work and soldier through it!!
 
I've been diagnosed with crohn's since Feb. 2012, currently on humira weekly 40mg . doctor put me on Entocort 9mg a month ago but I'm having headaches, foot cramps, and trouble sleeping. would it be ok to down to 6mg, should I expect trouble reducing the dosage
 
hi sauble456 --- trouble sleeping while taking entocort is probably quite normal ish…..i remember i used to grind my teeth in my sleep when taking it…probably best to check with your doctor about the other side effects….good luck
 
Does anyone else have problems with Entocort, as far as heart racing/lightheadedness when doing physical exertion of any kind? I was on prednisone (40mg) for a while back in the fall when I had a flare that required hospitalization, and that stuff REALLY messed me up in terms of my blood pressure/heart rate. I was glad to get off of it, but now I'm on weekly Humira shots and 9mg a day of Entocort and the Entocort is really affecting me. I generally feel lousy/weak/tired. I called my GI doctor the other day and he cut me down to 6mg, but I skipped one day last week (at their direction) and felt MUCH better that evening.

Has anyone else experienced the issues I described above with cortisoids in general and Entocort in particular?

oh, and I'm new here but not to new to Crohn's, haha. Thanks!
 
kotite4ever said:
Does anyone else have problems with Entocort, as far as heart racing/lightheadedness when doing physical exertion of any kind? I was on prednisone (40mg) for a while back in the fall when I had a flare that required hospitalization, and that stuff REALLY messed me up in terms of my blood pressure/heart rate. I was glad to get off of it, but now I'm on weekly Humira shots and 9mg a day of Entocort and the Entocort is really affecting me. I generally feel lousy/weak/tired. I called my GI doctor the other day and he cut me down to 6mg, but I skipped one day last week (at their direction) and felt MUCH better that evening.

Has anyone else experienced the issues I described above with cortisoids in general and Entocort in particular?

oh, and I'm new here but not to new to Crohn's, haha. Thanks!
Click to expand...

I do! I'm not as sure as tht it's not the humira yet though. I was on 9mg entocort since August now tapering down. I'm on 3 now but tapering has been hell! Aches etc very bad headaches. I get flutters, palpitations, and fear a damn heart attack regularly :/ it's no fun. Hugs
 
Thanks! Hugs to you too.

It sucks. I mean, maybe it's the Humira, but my all my doctors think it's the entocort. Glad to hear that I'm not alone, at least! :)
 
kotite4ever said:
Thanks! Hugs to you too.

It sucks. I mean, maybe it's the Humira, but my all my doctors think it's the entocort. Glad to hear that I'm not alone, at least! :)
Click to expand...


My dr doesn't seem to think entocort does anything :p. but I tend to disagree. I've also had weird sweats and been jittery etc. Now that I'm on humira I'm dying to get off the stuff and see, but so far my stomach is not happy. If you're sensitive I recommend a very slow wean to come off. I would alternate 9 and 6 for a week or longer depending on symptoms then go to 6 and then alternate 6 and 3. That slow. :)
I'm on 3 a day and next week will go 3-0 3-0 until finally none.
 
Hi Mychelle - I've been on entocort for about three weeks now, and my reaction is no better. They had me drop down to 6 mg yesterday, but again, I had the heart palpitations, the anxiety, trouble breathing if I did any physical exercise AT ALL.

They had me not take it on Friday and I felt so much better already by Friday night. Ugh, I hate this junk!
 
kotite4ever and Ckoenig... how is your outcome with Entocort and the heart palpitations? I have been on Entocort for 4 weeks and have experienced the same at 9mg. Mine seem to appear at night and wake me up ...which of course I have the insomnia issue which then is terrible to get back to sleep. Looking for user experience and any guidance you can provide over the long haul. Scares the poop out of me when it starts messing with the heart.
 
Hey there! I'm sorry you're having those issues :(

I stopped mine entirely and the issues went away, so I think that's a good sign in the sense that it was ONLY a side effect and not a sign of anything else happening with me, long-term.
 
Kotite4ever.. how are you doing overall? Did the Entocort help for a period of time? New to this so just trying to understand what I am in for.
 
Hi! Yeah, it definitely helped. Right now, I'm only taking Pentasa, which is a pretty mild/inert drug. So far, so good. If/when I relapse, I'll probably have to switch to something stronger. I'd definitely try Entocort again if I could. Hell, I would take it non-stop if I could, that's how well it worked. But it's not - from what I understand - something you want to take long-term.
 
Did the side effects go away or diminish when you dropped to the 6mg? You now seem better about taking Entocort than your post of when you where taking it at 9mg and having the bad side effects.

On the Pentasa, how are you taking it? My doctor said to take 8 pills @ 500mg each all at one time. On my third dose, I almost passed out and had black dots for vision. The pharmacy stated it was too high a dose at one time. I called the doctor's office and they said to stop taking it. Do you split the dose during the day?
 
The side effects definitely diminished once I dropped down, I think my previous post definitely showed that I was pretty alarmed by how I felt on 9 mg. Once I stopped completely, the symptoms went away as well.

I take four pills, four times a day.
 
No words can explain how I feel right now to know someone has been through this as can shed light on this. It really means alot!! DUDE HIGH FIVE.. Good luck on your progress and please share any tips, diet that helped.
 
Absolutely, I hear you for sure! High five to you too!

I've actually gone on largely a low-residue diet since the fall of 2013, when I had a partial blockage as part of a terrible flare-up.

I stuck to this plan, for the most part, with some exceptions from time to time (Drinking a little beer, some coffee, but only rarely for both).

It helped me quite a bit - well, that and the medicine of course!

http://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan?page=2
 
That's great to know thank you. How long have you been diagnosed?

Got a great report from the cardio doc today. I went through a Echo and Stress test earlier in the week. He understood that Entocort could have the side effects of the fast heart rate and raising of BP in some people. He stated that as long as it is not seriously adversely affecting me, I can stay on the 9mg.

My GI had me prescribed for 8 weeks of 9mg of Entocort and then quit cold turkey. Looking on the forums, it seems that everyone suggest tapering. I think my plan to taper slowly moving from over 5 weeks at 9mg, to 6mg for 2 weeks, 1 week at 3mg, and then 1 every other day. I have only 4 more days at 9mg. Did you taper from the 6mg?
 
Glad to hear that the cardiologist isn't too concerned!

I'm 39, and I was initially diagnosed when I was 20. So, on and off, I've had this for half of my life.

As for tapering, I did a taper, albeit an accelerated one. 9 mg one week, 6 mg the next, and then the last week was 3 mg before I stopped completely.
 
I'm 46, and was diagnosed about 5 weeks back so I am still trying to get my head wrapped around this. No real medical issues up to this so it really blindsided me. My father was diagnosed with Crohns however he took pres continuously for severe arthritis therefore his was "cured" by what the doctors say.

With very little info from the GI, I have been looking around the forums for anything. I was handed a script and said to come back in November. My case was deemed moderate..

What advice do you have in regards to the mindset? I keep falling back to the "why me" statement..

Also, what are your thoughts on the Anti-MAP therapy or other future advances?

Thanks again!!
 
Yeah, the "why me" can be hard to deal with sometimes, but I always tell myself that it could be a lot worse. Hell, a lot of our fellow sufferers on this website have a real struggle. I just try to live my life and manage things as best I can.

As for future treatments, I'm always cautiously optimistic!
 
the why me thing seems to come in waves for me……20 years later. You seem to deal with it well for a while, then it hits again and it goes away….very much like the disease itself. Good luck Blittle, not nice getting diagnosed at any time of life, but a moderate case is far better than an extreme case…there are people on here who have had dozens of surgeries and some who have never been able to work, have families etc…it can be pretty horrible, crohns disease - very horrible.
 
Are drinks considered an issue? I think that alcohol, sodas, and coffee may be an issue but what about your normal everyday drinks? Gatorade, Tea (sweet or unsweet)

What do you normally drink?
 
Most long term crohnies will tell you, avoid sugar. I agree.
There is a LOT of sugar in all those fizzy drinks, especially Coke.
Coffee is like a laxative for a lot of people, including me. Does it make the crohns worse? Not really, you just need to go to the toilet shortly afterwards.
Alcohol, i just had a glass of red and dont have huge problems with guts and alcohol, but everyone is different…that is the thing, your journey with it will be yours alone…..I had a very bad case of crohns when i was 18, i couldnt eat ANYTHING……everyone is different.
 
Totally agree with that.

For me, it's moderation. When I eat too much sugar, yeah, more bathroom trips. I can drink alcohol and coffee in moderation, but if I push my luck, I pay for it with pain later. You'll start to figure out what works for you and what doesn't.

Hang in there, I know it sucks, but you can do it!
 
Thanks for the encouragement. I took only 6mg today and the blurry vision is gone. I still have a few more days of the 9mg though but I have a family funeral to go to. Does 6mg constitute as a treatment or does it take al 9mg to be effective?

What is considered a flare? Currently having solid BM with little to no pain in the stomach area. My problem is holding weight at the moment. Maybe it is the healthier eating.. any tips to gain?
 
Hard to say. For me, when I'm flaring, there's a lot of bloating and mild pain. I think it's different for everyone, though
 
I hope everyone's weekend went well. I think my wife helped me figure out the increase in heart rate at night. Looking at the blood pressure med - Lisinopril - its effective working time is between 5 - 14 hours after taking. This seemed to line up with about the similar time that I was been waking up by this. To test, I decided not to take it Sat evening and wait to Sunday morning. Although I did seem to wake up, I did not because of a racing heart plus I was able to go back to sleep a couple of times. Additionally, I could wait to til normal morning time before going to the bathroom.

My biggest challenge now is trying to maintain weight. I hope to have an appt today with the GI to check for appropriate vitamins in the blood. Maybe that would help?

Has anyone been to the CCFA meetings/seminars? One is coming up in Raleigh NC this weekend and trying to decide if it worth it to travel to it.

Have a great Monday.
 

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