Stopping Entocort Cold Turkey

I was diagnosed with Crohn's in January, and have been on 4g of Pentasa since the initial diagnosis, with 9mg of Entocort added in just over 9 weeks ago. I saw my GI yesterday because my symptoms are getting worse instead of better (back to 8-10 b/m a day, was at about 5-6 about a month ago) and he is sending me for an MRI of my small bowel on Monday, to get one last look at things before he makes the decision to move to the next class of drugs. He asked me to stop taking the Entocort cold turkey, and said that I didn't need to taper since it didn't appear to be making a difference.

Flash forward to today and I've had cramping all day, and have had to run to the bathroom within 5 minutes of eating, every time I've eaten, which is not my norm. In addition to cramping, my abdomen is tender to the touch, and my back is extremely achey. I'm not sure what the symptoms of withdrawal would be, if that's what I'm experiencing, but I feel like it would be extremely coincidental for me to have picked up a stomach bug that just decided to show up today. The last time I took the Entocort was approximately 7am yesterday, so it's only been about 36 hours. Has anyone experienced anything like this after stopping a medication?

I had to stop entocort because I couldn't get a refill approved for a while and I guess it was about the third of fourth day that I started seriously flaring...like you said, lots of BMs.
When I got back on the script things go back under control again.

This Wednesday I was told to drop from 9mg to 6mg and to take 6mg and then quit. That's how they want to taper me off of it. Entocort worked moderately well for me so I'm worried that going off of it is going to cause me to flare. I'll find out in a couple of weeks.

Wow, he told you to quit cold turkey?

I've been tapering down for three weeks now. Two weeks of 6 mg, and now 3 mg with another week yet to go.

Hm, maybe my issues really are from just coming off the entocort completely. My entire body is achey today, but I don't have any other symptoms that would point to a flu or some other virus.

Thanks for the input.

My doc told me that you can quit cold turkey. I chose to taper, just in case. I was really nervous about coming off of it. I had some discomfort for a while and then it waned. Maybe just my body getting use to less pills. Who knows!

Entocort isnt systemic so you can pretty much quit cold turkey safely, but you might not feel as good in the process as if you did a slight taper.

I'm sorry but even entrecort must be tapered... sounds like your doctor is a quack. I mean really. I'm 98 percent certain that you must taper!!!!
Why doesn't anyone around here DARE to try helminth therapy, it works! At least for most people. And it means remission. I really don't understand humans. They prefer destroying their bodies with prednisone, to harmless helminths that should be in our bodies ANYways. ARRRGGG... sorry just venting. but really. I only say this, cuz I see all my brothers and sisters out there suffering away, and doctors taking advantage of our illness to make millions, when a better, safer, healthier alternative exists, and of COURSE they'll tell you its non-sense. I'm here to say it works. Or it has so far- I've been flare-up free for....since December- Thats the longest time since i've had the disease. look up Ovamed folks. read up on helminth therapy. Try it.

ekspain- i can tell you, NONE of us are preferring to destroy our own bodies. we are all just trying to find what works for us personally by combining our opinions with the advice of our doctors.
i dont think any of us have said that we wouldnt dare try it, i would do it! many of us have said that the idea creeps us out a little, which is just our opinion, but that if it came down to it and we needed to do it, we would. we would all try just about anything to feel better.

Can stop Entocort cold turkey because I've done it with no ill side effects what so ever. As far as Helminths go. I doubt anybody here is going "oh god give me steroids please I love them so much" .. we pretty much universally hate steroids but they do work and are clinically proven and tested to do so. If Helmith was studied and approved to work and was produced by a reputable company and regulated I'm sure any one of us would try it.

I'm not trying to pick on you but we've had plenty of people sign up saying thye found the miracle cure from worms, to battery acid, to god know what else. The fact is, each of is different and we choose to do what works for us under the advice of someone who has gone to school and has had to study the human body far more then someone who chooses an alternative therapy. Nobody here would knock alternative therapies but if they are on a therapy that WORKS for them, there is no reason to act condescending towards them because they choose to not do what you feel is the right thing. It's pretty rude in fact to try and speak to us as if we're all uninformed idiots who are simply sheep to our doctors and the pharmacuetical industry.

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There are in fact at least 2 members Dan and Heidi who prefer the alternative treatment path. Dan has had good luck with MMS and Heidi with Ovamed but I haven't seen her updates in awhile. So it's not like all of us are opposed to different treatments.

I do not mean to take this thread but I have been on Entocort for over 2 years and there is no talk of getting off of it. In fact when I had to quit cold turkey due to money issues I was in so much pain. I hear most of you talking about tapering off of it and not I am concerned that I have been on it too long. Does anyone know long term effects for long term use? Do you think I should talk to my GI about what might be next?

Paulah28 said:

I do not mean to take this thread but I have been on Entocort for over 2 years and there is no talk of getting off of it. In fact when I had to quit cold turkey due to money issues I was in so much pain. I hear most of you talking about tapering off of it and not I am concerned that I have been on it too long. Does anyone know long term effects for long term use? Do you think I should talk to my GI about what might be next?

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Paulah,

My GI just took me off of Entocort a few weeks ago, cold turkey I may add. :ycool: He said that many of the meds that a Dr will give you for the symptoms are not for long term use, but out of all of them, Entocort has the least ammount of side effects. If your Dr has not take you off of it by now, there must be a reason, but it never hurts to ask. Good luck!

There's no need to taper from entocort because it is very localized and has little to no effect on your adrenel gland. If you feel bad going off of it it's because it's no longer suppresing the symptoms.

Entocort Usage

I have now been on Entocort for the 2nd time. Each time I have used it I went on for 3 months. The first month I took 9mg. which is 3 capsules. the 2nd month weaned down to 2 and the 3rd month to 1. and then off. The first time I did this was 6 months ago. I was fine. this time on it I am very depressed and no energy and just an overall feeling of wanting to sleep. I am on my way off of it now and today is my last day. In fact I am not doing the entire 30 days of 1 capsule. I have done 2 weeks. But I feel worse mentally.

I have prided myself on going vegan and eating as healthy as possible. And my downfall has been getting into junk foods at times which causes flares.

i am happy to be getting off of this drug.

I know that is worsens cataracts and can cause osteoporosis. And I am hopefully done with this. And will follow my healthy living with a lot of stress management. Will try to post my progress and happy to support others who are wanting to live :depressed: .

You guys...what is the difference between Prednisone and Entocort? Can you take entocort long term? Sue

I am not sure of the difference. Right now I am in the midst of a flare so my dr has me on 40mg of pred and continuing the 3mg of entocort every day. I am scared to get off entocort but if I have been on it for 2 years and now am having a flare then maybe it is not working anymore. He is talking about starting Cimzia....anyone heard of that one?

I had been taking it for 9 months and I tapered it out. I was told I needed to taper it. Most steroid type drugs need to be tapered even if taken for a short period of time. At least that is what I have seen.

Just verifying what everyone is saying.

I stopped entocort today

I feel wonderful and healthy off of this mediation. I have gained weight and have been depressed

@Sue: In answer to the question what is the difference between entocort and prednisone. Prednisone is systemic and effects the whole body with a lot more side effects including weight gain and the risk of osteoporosis. Entocort as my understanding is more localized to the colon and reduces inflammation there without all the system side effects. In general when I started taking Entocort I was told or read that you need to wean off it. Not sure what happens if you don't, butI didn't want to try!

kit

Entocort is a steroid that can suppress the adrenal glands. So when you stop it suddenly, the side effects are from the adrenal glands having to "wake up" quickly. I was told NOT to suddenly stop the Entocort. I am actually tapering off REALLY slowly as I am having very bad side effects from the adrenal suppression. I was ok going from 9 mg to 6 mg per day, but when I went from 6mg to 3mg per day all hell broke loose and I felt like a bus had run me over - no energy, lots of abdominal pain, lots of achy muscles, brain fog so bad I couldn't answer the simplest of questions some times and moody and bitchy like the worst PMS ever.

The only way out of the issues,I was told, is to slowly taper off. Phone the GI, tell them you are having these symptoms and ask to go on a slow taper. Right now I am on alternating days of 6mg, then 3 mg, then 6 mg - I am to do that for two weeks and then go to 6, 3,3,6 for two more weeks and then 6,3,3,3,6 and so on and so on. Even if I didn't know what mg I was taking that day - I could still tell you which is a 6 day and which is a 3 day just by how I feel physically. I was on Entocort for 8 months so the longer you are on the worse the coming off will be.

Although only 5% of the Entocort is supposed to make it into the blood stream and therefore to the Adrenal Glands - depending on the length of time you are on it and the person's sensitivities to steroids, it can lead to trouble coming off of it. I am apparently someone who seems to be prone to the side effects of whatever medication I happen to take. Google Adrenal Suppression to see what you may face by coming off of it too quickly.

It always amuses me when we hear one doctor saying "never" or "not needed" and the next one say "always" about something, when we all know that Crohnnies have no hard and fast rules about what is effective for the disease from person to person!!!

For all you that are taking or took Entocort did it work for you and how long before you started seeing results. My son has been on it 2 1/2 weeks and we're really not seeing any improvement. At what point do you throw in the towel and move on to something else?

It may be dependant on how bad his disease is at the moment and what his dosage is before you'll see any improvement.

Mom2- entocort took a whole month to kick in for me. Pred took 3 days so a massive difference! When it did start working it was fantastic. I'm still on it 18 months later and feel so much better for it.
My GI said that it's quite normal for it to take a month to work but I was also ready to throw the towel in. I'm so glad I didn't though.
Hope it helps him too

bushydougie said:

Mom2- entocort took a whole month to kick in for me. Pred took 3 days so a massive difference! When it did start working it was fantastic. I'm still on it 18 months later and feel so much better for it.
My GI said that it's quite normal for it to take a month to work but I was also ready to throw the towel in. I'm so glad I didn't though.
Hope it helps him too

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Oh, that is SO encouraging! Thanks for sharing that.

Glad to be of help

I've been taking 3 Entacort pills for 2 months, then taper to 2 for 2 weeks then 1 for 2 weeks. I have a very very smart doctor ....tapering must be called for with this drug. I notice a headache next morning when I switched down to 2. Has anyone else ever experienced headaches when tapering? I know in the leaflet, headaches was a side effect. But I haven't had any headaches since I started this process.

I have been on Entocort for 2 months. My Dr. told me last week to taper off but I went cold turkey. I had terrible headache, very tired and irritable. So my advice would be to taper off, although I believe whether you go cold turkey or taper you will have mild to severe side effects. My Dr. said you cannot stay on this for more than 3 months but each case is different and crohn's can be mild to severe.

I just joined this forum and would like to see everyone support each other rather than make rude comments or be judgmental. We all come from different walks of life and must do what is best for our health. Life is hard enough living with this disease without having some stranger implying we're stupid for not doing what they do.

Be kind to one another and do no harm...TZ

I've been on Entocort for about a month and have just halved my medication (on my dr's orders) I've had persistant headaches and just getting to the supermarket is hard. Lots of sleeping. And I've felt a bit depressed on it.
Good luck!

That is too quick. It should be tapered off!! I got body aches even doing a taper.

I should have asked at my GI appointment today but didnt think of it, he wants to stop the entocort and start me on prednisone. Does anyone think the I will have any issues from stopping the entocort without tapering off?

How long have you been taking Entocort Marielle? I've stopped cold turkey at 3 months with no symptoms but generally if you've taken it for a while than its best to be on the safe side and taper. Be sure to contact your doctor about it.

I am currently tapering off of Entocort my doc told me I could taper if I wanted or I could quit cold turkey if I wanted he said theoretically Entocort should be able to be stopped cold turkey but my reasoning, which the doc said was sound, is that tapering slowly would give my body time to adjust and would allow me to see if symptoms were coming back a little at a time rather than having all the sypmtoms rush back at once...I also started LDN as I was beginning the taper down. I took 9mgs for 2.5 months then 6 mgs for 3 weeks now i'm down to 3mgs and am beginning to have a few symptoms (basically it feels like a storm is brewing in my guts) so I am going to stay with the 3mgs as a maintenence dose for at least a month bf I stop..I have had headaches and acne with the entocort but I have other issues that cause me to have headaches so it can be hard to tell whether I'm having an entocort headache, a torn rotator cuff arthritis headache, or a sinus headache...