Withdrawal from entocort?

[DHabes]

First, I am new to the forum. I'm 27/M, been suffering from Crohns for 8 years but was originally diagnosed with IBS and treated it with very careful diet and over the counter drugs for some symptoms. I got officially diagnosed with a 'moderate' case of Crohns 5 months ago and have been on Entocort (9mg) + Pentasa (4 g) and am feeling my worst of the past 8 years. My normal symptoms are diarrhea, often with mucus, and very bad bloating and gas. The drugs have mildly improved my gastro symptoms but I am experiencing bad side effects that have been almost debilitating, mostly fatigue.

My doctor agreed that I should start tapering off entocort as it hasn't really helped and it has been about 4 months on it, however each time I try to drop from 9mg to 6 mg I get bad symptoms 2-3 days later and I'm not sure if it's a flare or withdrawal?! I've tried this tapper twice and both times woke up in the middle of the night with very bad nausea, cramping, running to the bathroom for bms all night (although not my usual diarhea from a flare, just a painful cramping bm) and I have had extreme fatigue.

Is it normal to suffer from withdrawal from entocort like this? I haven't heard of this issue with entocort before, I've heard it's normally much easier to taper compared to prednisone. It feels like my adrenal glands are completely dead and I'm a zombie. At this point I just want to get off entocort as I really regret trying it... they want to put me on Humira now but that's a whole other story.


Does anyone have tips for tapering? I've heard of alternating daily doses before dropping down a whole pill per day?

Dan

 

[charlottem]

Hi

I'm struggling to come off entocort as well! i have been on it a year now and everytime i get down to 3mg i end up with pain etc etc... I am on azathioprine as well though

I get really bad mood swings with it which is quite hard to deal with

I dont really have any tips but i thought id reply because im experiencing the same sort of problem

 

[DHabes]

Hi

I'm struggling to come off entocort as well! i have been on it a year now and everytime i get down to 3mg i end up with pain etc etc... I am on azathioprine as well though

I get really bad mood swings with it which is quite hard to deal with

I dont really have any tips but i thought id reply because im experiencing the same sort of problem

I am also experiencing mood swings! I hesitant to bring any of this up as I was told Entocort was mild and easily tolerated, but I've been struggling with anxiety/mood swings and chronic fatigue and really want to get off of it! It's good to know I'm not alone in this, even though I'm sorry you're experiencing similar issues.

Have you tried alternating your daily taper to make it more tolerable? ie. 9/6/9/6... 6/6/6/6/... 6/3/6/3... 3/3/3/3/ .... etc. I saw someone post something about this from many years ago to say that it helped but haven't seen anything else on it.

 

[charlottem]

I am also experiencing mood swings! I hesitant to bring any of this up as I was told Entocort was mild and easily tolerated, but I've been struggling with anxiety/mood swings and chronic fatigue and really want to get off of it! It's good to know I'm not alone in this, even though I'm sorry you're experiencing similar issues.

Have you tried alternating your daily taper to make it more tolerable? ie. 9/6/9/6... 6/6/6/6/... 6/3/6/3... 3/3/3/3/ .... etc. I saw someone post something about this from many years ago to say that it helped but haven't seen anything else on it.

Oh wow im the same actually! I feel a bit stupid bringing it up with my consultant that im experiencing these side effects because as you said, everyones like 'oh its much better than pred'

funnily enough its made me super hyper! the IBD nurse could not believe how much i can talk :ybiggrin: but maybe thats just my personality

Im really wanting to get off it too but unfortunately i have an ulcer on the outside and then 2 days i noticed another damn ulcer appearing so im not sure whats going to happen but i hope they dont increase the entocort again :ack:

I have not tried alternating but I have to admit i did think that would be a good idea so im tempted to bring it up with my gastro dr but hes very keen to get off it asap now im fully established with my azathioprine but the drs at the hospital im at at the moment mentioned infliximab but i need to see my consultant really and get a proper examination and evaluation from him which probably means scans and scopes :yfrown:

anyway i hope things ease up!

 

[Kas8173]

I'm also on entocort and and have tried and failed to taper from it twice. I'll share some of the information I've gathered about it based on what I've read online and from questions I've asked my GI doctors.

Budesonide / entocort is generally preferred to prednisone, since first pass metabolism in the liver means that 90% of it gets metabolised before it reaches the rest of the body. So it mostly affects the gastrointestinal tract.

The limitations are that due to the way the granules dissolve, it only minimally affects the stomach and lower colon. When it reaches the stomach it has only just started to dissolve, and by around the middle of the colon most of it has already dissolved, so Crohn's activity in these areas will not really be helped by it. Steroids also don't usually achieve deep mucosal healing.

It is generally not advised to go beyond treatment with budesonide for three months, since after this time, the 10% which still reaches the rest of the body will begin to create the same side effects that prednisone does, like fatigue, mood swings, irritability, adrenal insufficiency, bone density reduction and others.

After treatment with budesonide for longer than 3 months, it is quite common that tapering can be difficult. You will usually need to start an immunomodulator like azathioprine and or an anti-TNF agent like adalimumab (humira) in order to be able to taper from it successfully.

If your doctor is recommending that you start Humira I would really advise that you go along with that. In most cases it should help you to withdraw from the budesonide. It has also been shown to improve your chances of deep mucosal healing, which steroids don't usually achieve.

I will be starting humira soon. I'm currently on 9mg/day of entocort, my GI's advice was to go down to 6mg/day when I have my first injection, then after 2 weeks go down to 3mg/day and then stop after a further two weeks.

 

[DHabes]

Thanks for the info Carl.

Follow up on my condition:
My GI took me off the Pentasa and my extreme fatigue almost instantly went away. It seems like some what I thought were withdrawal symptoms were side effects of Pentasa. Still looking for a fix for my regular Crohns symptoms as I am still flaring while on entocort (now taking 6mg/day), and I had a terrible reaction to Imuran last week (pancreatitis that was luckily caught pretty early). I'll find out tomorrow if I'll be starting on a biologic or something else... I'm pretty scared after all these negative experiences I've had with medication so far. Makes me wonder if I am in fact flaring at all anymore or just experiencing side effects from all these medications I've tried in the last couple months.

Dan

 

[DHabes]

Oh wow im the same actually! I feel a bit stupid bringing it up with my consultant that im experiencing these side effects because as you said, everyones like 'oh its much better than pred'

funnily enough its made me super hyper! the IBD nurse could not believe how much i can talk :ybiggrin: but maybe thats just my personality

Im really wanting to get off it too but unfortunately i have an ulcer on the outside and then 2 days i noticed another damn ulcer appearing so im not sure whats going to happen but i hope they dont increase the entocort again :ack:

I have not tried alternating but I have to admit i did think that would be a good idea so im tempted to bring it up with my gastro dr but hes very keen to get off it asap now im fully established with my azathioprine but the drs at the hospital im at at the moment mentioned infliximab but i need to see my consultant really and get a proper examination and evaluation from him which probably means scans and scopes :yfrown:

anyway i hope things ease up!

So sorry you're going through that... I definitely feel like a crazy person especially after finding out that my most severe symptom was being caused by Pentasa (which is normally extremely well tolerated). Hope you start healing up soon! Don't know if it will help you but I did start taking some supplements (NAG, L-Glutamine, Turmeric pills) that seemed to have helped with my entocort taper (my body still hates me, but slightly less than normal If you start on a biologic like infliximab let me know how it goes! I'm very apprehensive to start on one after the difficulties I've had with these 'well-tolerated' medications.

 

[Jo-mom]

I know this comes a few months late - my son too experiences many symptoms from withdrawing from Entocort. Tapering from 6 to 3 mg was bad. He is also on Remicade - so he reduced Entocort and his BM's immediately c:ytongue:hanged the next day - more often and less formed. Once he received another Remicade infusion, he was okay again. He was then on 3 mg and we tried tapering to 3mg every other day, and again, next day, same thing, however, at the same time his remicade levels were really low (we didn't know), and he went into a major flare.

He went off Entocort yesterday and today he again has had an immediate change in BM's, however, he just had an Remicade infusion today, so hopefully things will settle.

So interesting that other people are experiencing difficulty with withdrawal. For those of you who were tapering a few months ago, how did it go? Did you finally get off, and how?:ytongue:

 

[Kas8173]

I managed to come off it after I began receiving infliximab.
It needs to be tapered slowly over at least a month, you should leave at least a week every time you drop 3mg.

If you are tapering on the above recommendation, and you are still experiencing flares, then that is a sign that your other medications are not enough to control your disease. You will either need to increase the infliximab, or change to another biologic, or add an immunomodulator such as azathioprine or methotrexate. Your consultant should be able to advise on which of these to do.

 

[torytory]

First, I am new to the forum. I'm 27/M, been suffering from Crohns for 8 years but was originally diagnosed with IBS and treated it with very careful diet and over the counter drugs for some symptoms. I got officially diagnosed with a 'moderate' case of Crohns 5 months ago and have been on Entocort (9mg) + Pentasa (4 g) and am feeling my worst of the past 8 years. My normal symptoms are diarrhea, often with mucus, and very bad bloating and gas. The drugs have mildly improved my gastro symptoms but I am experiencing bad side effects that have been almost debilitating, mostly fatigue.

My doctor agreed that I should start tapering off entocort as it hasn't really helped and it has been about 4 months on it, however each time I try to drop from 9mg to 6 mg I get bad symptoms 2-3 days later and I'm not sure if it's a flare or withdrawal?! I've tried this tapper twice and both times woke up in the middle of the night with very bad nausea, cramping, running to the bathroom for bms all night (although not my usual diarhea from a flare, just a painful cramping bm) and I have had extreme fatigue.

Is it normal to suffer from withdrawal from entocort like this? I haven't heard of this issue with entocort before, I've heard it's normally much easier to taper compared to prednisone. It feels like my adrenal glands are completely dead and I'm a zombie. At this point I just want to get off entocort as I really regret trying it... they want to put me on Humira now but that's a whole other story.


Does anyone have tips for tapering? I've heard of alternating daily doses before dropping down a whole pill per day?

Dan

I as well had serious withdrawal symptoms from Entocort. Like you ,at a certain decreased dose ,my symptoms flared up. I was on it for 4 years ,trying every 3 months to wean off. (For Microscopic Colitis)I experienced severe fatigue,nausea,vomiting,depression. I would end up on Entocort again- just to function at work. I had to take so much sick time - which effected my job security)I could NOT get off of it. My GI was not especially helpful. He said I was one of 2 patients that struggled with withdrawal from Entocort. Suggested over counter meds(Pepto Bismal to stop diahrea - 2 tablets every 4 hours - I just couldn't stomach them all day ,day after day- plus still had cramping ,nausea, depression (mood change) many BMs- just less watery stool (Pepto Bismal will cause stool to be black in color)He also had me try a stool thickening powder mixed in drink- it was horrible and made me nauseous and an uncomfortable FULL feeling)
I was laid off last March 2020 from COVID, so I decided to struggle through the withdrawal- I seriously did not begin to feel slightly better until July(5 months) I lost 40 lbs,could hardly eat ,achy,head aches,(I seriously thought I had a Gastro cancer or some serious undiagnosed disease. )I believe I am still not producing enough of my own Cortisol. I think being on Entocort for so long damaged my pancreas/adrenal glands.
It's been over a year now and I seem to get better a bit at a time. Still fatigued easily , depression, chronic diahrea. Just today ,I had blood work to check my Cortisol levels at my request. So we'll see what the results say . I basically have up on medicine last year ,stayed home and suffered. Hardly any info on line either ,so I was SO HAPPY to find this forum. In a nut shell - my colitis symptoms are much worse now than before I started Entocort- whether that's just my diseases progression ? Or Entocort related ?
My Symptoms on Entocort outweighed my Colitis Symptoms . It seriously messed with my thoughts, emotions and memory. I felt like I was 13 going through puberty again! Crying,angry- I know what "seeing red" means now.i was all over the map. I initially thought it was early onset menopause and for a year,saught out psychiatric help and Menopause specialists. After antidepressants, anxiety meds,hormone therapy I still felt crazy. I started having night Terrors in about year 3 on Entocort. Shaky Leg Syndrome,buffalo hump on my back ,moon face , gained 64 pounds the first year I took Entocort. Could never feel full - hungry ALL time.
So ,that's my journey- I'm sorry I cannot give you concrete suggestions because I never found an easy fix to taper off Entocort. Please take care .

 

[torytory]

Thanks Linda. I'm glad Entocort is helping your symptoms. It's a double edged sword- I hate to hear it has effected your mental health negatively. I believe Entocort has improved many people's lives and I had hoped to benefit from it but unfortunately I seemed to react negatively to it. Take care of yourself!

 

[my little penguin]

@torytory entocort is still a steriod
Any steriods of any sort especially long term can cause adrenal insufficiency.
My child had this for a period of time after stopping prednisone.
An endocrinologist has to test your 8 am cortisol levels and run an acth test .
Please see an endocrinologist.
It’s not something that you can “push through”
The doc can help you figure it out
Most Gi /rheumatologist are not as aware of it

https://aiunited.org/

 

[torytory]

@torytory entocort is still a steriod
Any steriods of any sort especially long term can cause adrenal insufficiency.
My child had this for a period of time after stopping prednisone.
An endocrinologist has to test your 8 am cortisol levels and run an acth test .
Please see an endocrinologist.
It’s not something that you can “push through”
The doc can help you figure it out
Most Gi /rheumatologist are not as aware of it

https://aiunited.org/

Thanks my little penguin. I am definitely going to do that- get a referral to an endocrinologist. I had become very frustrated with my medical care and wasn't sure what to do. This forum has opened up some new hope for me to finally get some answers.

 

[my little penguin]

Please tell your endocrinologist about the steriods .
For my kiddo they would not do any cortisol testing until he had been off steriods for 8 weeks
But they can tell you how to wean when Gi decides you need to wean

 

[Jo-mom]

Absolutely. My son always saw an increase in bathroom activity the day after dropping his dose. It will take a few days for your body to adjust....

 

[my little penguin]

Given how long you were on the meds
I would expect at least 2-3 days to adjust to the lower dose
Every time we weaned Ds on pred
He had a horrible two days
Felt bad , joint pain etc…
The lower the dose the worse it gets
Secondary adrenal insufficiency can also occur
But that isn’t able to be known until you are actually off all steriods

Good luck with the wean

 

[t-bone]

Sorry to hear of your troubles Lynda, sounds like a buncha stuff stacking up.
i've seen you posting around the board tho, and i know you'll get thru this just fine
... it's just gonna suck for a bit, and that's that ... but, better days are ahead

I had a lot of breakthru as I tapered as well ... it just sucks ...
The good news is things will start to turn back around soon enough as your system gets used to the lower steroid levels


Have you tried turmeric?
it really helped me get some semblance of normalcy back
There's lots of good information on it in the diet and supplements subforum
... might be something to gently and carefully ask your g.i. team about?

I've learned that some provider hate it when their patients talk about supplement/ diet stuff, (and i get it, there's some crazy fads out there)
... but they also know that a sensible diet with a well thought out and targeted minimal therapudic dose supplement routine can be bring amazing results

I know that soon enough the stelera will work it's magic for you, and this will all just be an unpleasant memory


It's actually nice down in your neck of the woods now compared to the rest of us stuck in winter
... the desert is incredible this time of the year
Hope your car gets fixed and can take you peaceful places.

 

[Jo-mom]

@Lynda Lynda - when is your next Stelara treatment?

 

[Jo-mom]

How are you doing today? Is it every 8 weeks and is it your first 8 week interval?

 

[Jo-mom]

Just wondering because my son went through a similar scenario but with Remicade. It was when he was on his first 8 week cycle after his loading dose and at that time, he was reducing Entocort. We thought that he was getting symptoms because he dropped Entocort to a lower dose, but it ended up being because he didn't have enough Remicade in his system. His symptoms worsened on his 5th week. We didn't know this until later. Wondering if it could be a combination of both for you. I know Stelara takes longer to fully work. Are you still having symptoms today?

 

[nathant]

I've been trying to taper off budesonide ER/DR (generic entocort) for a few years. I'm still not totally off, but what has helped for me is to go as slow as possible - only change once a month or less, alternate days to drop by 1.5 mg (like 6/3 mg for "4.5 mg/day" etc), and wait even longer if symptoms get worse temporarily.

 

[my little penguin]

You can switch to pred
Talk to your doc
For my kiddo drop by 5 mg a week
Then drop 1- 2 mg every 2 weeks once below 10 mg
That was what endocrinologist suggested and Gi agreed once he had been on steriods for months
It took a long time and every drop he felt like garbage for 2-3 days (hence the 2 weeks at the same dose )
Good luck