Entocort EC (Budesonide) Long Term Use

[CrohnsNMe2]

I have Crohn's of the terminal ileum. I am on cocktail of medications.

Pentasa - 4 x 250mg Pills - 1000mg- (Morning and Evening)
Entocort EC 3 x 3MG Pill - 9mg - (Evening).

My problem is that the Doctor tried lowering the Entocort to the maintenance dose of 6mg and I flared up almost immediately. He then told me to resume taking it at 3 x 3mg per day.

Has anyone taken Entocort at the 9mg dosage long term? What if any side effects have you experienced?

I took Entocort EC in the past on a short term basis with Some Success. Combining Entocort with Pentasa appears to be the most effective treatment I have had so far. I'd say 65% of the time, I have good days where I feel semi normal. Other 35% I still get pain and or upset stomachs...but that's the nature of Crohn's.

For the first time in a very long time, I am gaining weight (little too much), but I think that's a side effect. I went from ~110 to ~140 (5'4 male)

I've never been able to get myself in any sort of long term remission. It's more managing symptoms through medication. So I wonder if Entocort will stay effective for long term use and if people who have used more than 1 yr at 9mg had any major affects from the prolonged usage.

 

[ronroush7]

My recent dosage was 3 x3 mg. just like you. It was only for a few months . I don't think anyone is supposed to be on it long term. Everyone is different but I don't think it was all that effective for me. I hope you get relief soon.

 

[CrohnsNMe2]

So far I've been on the medicine since End of June. I will be on 3 x 3mg (9mg) until at least April 2017 when I go back to see the Doctor for a follow-up. Unless of course I have a major issue (HOPE NOT) before then. So that'll be almost a year.

I'm wondering what the alternative might be to Entocort 9mg as it's not meant to be taken long term at the 9mg dosage. 6mg is maintenance dosage, I'm told. Unfortunately, as soon as I dropped to 6mg, I was in agonizing pain, and immediately phoned the doctor. Whom then recommended I re-up the dosage.

 

[my little penguin]

Steriods including this drug are not suppose to be long term
They are suppose to be utilized for flares
This indicates a need for other meds
Is there a reason your not stepping up therapy to an immunosuppressants or biologic?
Such as mtx ?

 

[ronroush7]

I am wondering about prednisone or a biologic. Ask your doctor.

 

[CrohnsNMe2]

A. I've never had success with Prednisone. It upsets my stomach and is ineffective at tampering down my symptoms.

B. I have tried Mesalamenes and the only effective formulation has Drug been Pentasa mixed with Entocort.

C. I was put on Entocort after my last Colonoscopy diagnosed the presence of Erosions in the terminal ileum (Already had DX of Crohn's). Colonoscopy was done after increase of symptoms.

D. Not tried Biologics. I presume that biologics are Remicade and Humira? Have people had success with those drugs?

I am always leery of switching from one drug to another. My symptoms always flare up and if the medication doesn't work, then it's a protracted problem of getting my Crohn's to tamper down.

When the Dr. asked I lower Entocort to 6mg, which I tried that for about 1.5 weeks, I got sick again rather quick. Even after I reupped Entocort back to to 9mg.. it was at least 2-3 weeks before I felt "OK".

 

[ronroush7]

Yes, biologics are Remicade, Humira, Cimzia, Stelara,Entyvio and I think Simponi. Everyone is different. My most successful one to date so far is Cimzia but it eventually wore out. There are people who have been in remission for years from biologics.

 

[my little penguin]

There are tiers to drugs
The mildest and least effective are 5-asa (i.e. Pentasa Aspiro etc..)
The next tier is immunosuppressants (6-mp , imuran and methotrexate)
These tend to be more effective and are FDA approved as monotherapy for crohns
Most people achieved remission with theses and no longer need steriods on a regular basis -just for flare ups

The last tier is biologics
They are remicade humira cimizia Stelera and simponi
A lot of folks have succcess with these
Ds is one of them
His scopes have been pristine since starting biologics
His only need for steriods was for arthritis and Sweets syndrome flares not crohns

Here is document talking about types of meds
http://www.ccfa.org/assets/understanding-ibd-medication.pdf

http://m.gastro.oxfordjournals.org/content/early/2015/01/06/gastro.gou087.full

 

[CrohnsNMe2]

What are steroids considered in the "tier system"?

I will discuss with my doctor in April at follow up. I have positive results with Entocort, but I'm not thrilled with the whole Pentasa + Entocort weight gain. But the minor irritations are quickly overcome by being able to have a "normal life" about 65% of the time without constant pain. The other 35% i still get bad abdominal pain etc.

So we will see what Dr says at next follow up. How long did Biologics take to work on your son? And at what dosage? How were biologics administered?

 

[my little penguin]

Steriods are rescue meds they are not maintanece meds
That means they should be used the least amount possible for the shortest time possible
6-mp (pills)takes 3-4 months to work which is why they use steroids as a "bridge "
Until the 6-mp can take over then you wean off steriods
Imuran (pills) takes about the same amount of time
Methotrexate(shot once a week) takes 2-3 months again a "bridge" steriods is typically used

Biologics
Remicade takes 6 weeks
Administered by iv infusions every two months after your loading doses during the first 6 weeks
Humira takes 3-4 months -injection every two weeks
Biolgics would use steriods as a bridge as well until the meds take over

 

[CrohnsNMe2]

What is the typical medication and/or biologic for Crohn's in the terminal ileum?

My main complications have been significant weight loss and erosions in the terminal ileum. Which is why I'm back to Steroids and have been prescribed Entocort + Pentasa. I had untreated Crohn's for many years (Whole it's IBS Fiasco) until finally getting diagnosed ~ 4 years ago.

Ever since, its been a constant battle.

 

[my little penguin]

Pentasa has not been proven or approved to be used as a therapy alone for crohns
Pentasa only treats the top layer of the intestine like a cream but does not heal the rest of the layers
Crohns affects all of the layers .

Most crohns affects the terminal illuem
It's extremely common
Meds used are what I listed above
Immunosuppressants (6-mp, imuran ,and methotrexate)
Or biologics (remicade humira cimizia Stelera and simponi)

When disease flares most are given steriods followed by a maintenance med (immunosuppressants or biologics ) that work and allow the person to stop the steriods

 

[If*]

Hi, hope today finds you doing better.
As others mention steroids are often not for maintenance. But everyone is different, and Dr.s have a different approach for each of their patients. Try to take what the 'others' say with 'a grain of salt.' We have to live in these bodies and are the ones who pay for our choices. IBD can be very individual. We need to listen to what effects, good and bad that we go through and relay to our Dr.A medication diary could be helpful.
No matter what medication treatment is taken, it is likely a good idea to do follow ups to see of it is actually working and not masking symptoms. (Scopes are usually the best for a visual) not just a how u feeling.

Stay strong, it's good to ask questions.
Be well, God bless.

 

[CrohnsNMe2]

I realize everybody is different, and there is no "one size fits all" Crohn's patient. I've been sick since childhood + teenager but took doctors a good 20 years to figure out it wasn't just "Belly aching" and IBS.

Had a DX of Crohn's for almost 4 years, and since then been a constant struggle to get the right concoction. If my Crohn's flares, I get sick and quick.

I've been as low as 110lb, anemic, low potassium, and unable to eat. And more Kidney stones than I can count... Right now, I've put on about 30 lbs from all the medication and less symptoms. So not necessarily a bad thing.

Recent complication (though Kidney Stones are ongoing and never ending) was erosions in the terminal ileum. I see a good doctor, and we've been trying to work together to get a winning solution. I trust the doctor 100%. Just seems like Crohn's always has a mind of its own.

That's why the whole steroids + Pentasa at the moment. My family Dr. Suggested at next visit to specialist, I inquire about immunosuppressants or biologics. She explained steroids got nasty side effects long term.

Cushing's Disease, Osteoporosis, etc.

So it's why I inquired here to see who takes what and how it works.

 

[Justanothercp]

I have been on 3x3 for years. I've tried to taper but can't. I also take a biologic and asacol. I was fearful of being on it for so long, but my doctor says there are no options and that it is the lesser evil for now, because without it, I'd lose more bowel. And MD says keeping as much bowel as you can is goal number 1.
So far, the side effects are minimal. Blood work is good, bone density is good, the only side effect I notice is skin that is fragile/easily bruises.
I try to take 3x2 a couple times a week, just because....
Good luck to you.

I have Crohn's of the terminal ileum. I am on cocktail of medications.

Pentasa - 4 x 250mg Pills - 1000mg- (Morning and Evening)
Entocort EC 3 x 3MG Pill - 9mg - (Evening).

My problem is that the Doctor tried lowering the Entocort to the maintenance dose of 6mg and I flared up almost immediately. He then told me to resume taking it at 3 x 3mg per day.

Has anyone taken Entocort at the 9mg dosage long term? What if any side effects have you experienced?

I took Entocort EC in the past on a short term basis with Some Success. Combining Entocort with Pentasa appears to be the most effective treatment I have had so far. I'd say 65% of the time, I have good days where I feel semi normal. Other 35% I still get pain and or upset stomachs...but that's the nature of Crohn's.

For the first time in a very long time, I am gaining weight (little too much), but I think that's a side effect. I went from ~110 to ~140 (5'4 male)

I've never been able to get myself in any sort of long term remission. It's more managing symptoms through medication. So I wonder if Entocort will stay effective for long term use and if people who have used more than 1 yr at 9mg had any major affects from the prolonged usage.

 

[Jabee]

I also took Entocort at the 9 mg (3X3) dose for 2 1/2 years with minimal side effects until I landed in the hospital again. My GI then put me on 6MP but I developed acute pancreatitis and had to discontinue it. So I am back on Entocort but playing around with the dose because it is giving me severe migraines and I have enough of those without it! It's a real balancing act: enough to stop the abdominal pain but not so much that I get daily migraines. I also have some focal narrowing of my terminal ileum causing partial obstructions every month or so. It's a bit of a roller coaster ride at the moment. Hopefully things will settle down.

 

[CrohnsNMe2]

Justanothercp: Asacol made me sick as a dog and caused unpleasant reactions. Seems we're in the same boat about tapering Entocort.

What biologic are you on and what dosage?

Jabee: Sorry to hear you've reacted poorly to Entocort. Crohn's is a hell of a disease to manage. Good luck and hope the migraines subside.

 

[Jabee]

CrohnsNMe2:

Thanks so much. I've had chronic migraines since the birth of my third child (as well as celiac disease and crohn's), but they always vanish while on prednisone--and who wants to take that for any longer than necessary?! I get Botox injections which helped a lot once we figured out which muscles are triggering the migraines, but I'm beginning to think what I thought were natural variations in its effectiveness were really Entocort-induced.

Best of luck with tapering Entocort. Is your GI thinking of adding anything in addition to it (in addition to the Pentasa)?

 

[Justanothercp]

I've been on remicade for years...



QUOTE=CrohnsNMe2;957397]Justanothercp: Asacol made me sick as a dog and caused unpleasant reactions. Seems we're in the same boat about tapering Entocort.

What biologic are you on and what dosage?

Jabee: Sorry to hear you've reacted poorly to Entocort. Crohn's is a hell of a disease to manage. Good luck and hope the migraines subside.[/QUOTE]

 

[CrohnsNMe2]

CrohnsNMe2:

Thanks so much. I've had chronic migraines since the birth of my third child (as well as celiac disease and crohn's), but they always vanish while on prednisone--and who wants to take that for any longer than necessary?! I get Botox injections which helped a lot once we figured out which muscles are triggering the migraines, but I'm beginning to think what I thought were natural variations in its effectiveness were really Entocort-induced.

Best of luck with tapering Entocort. Is your GI thinking of adding anything in addition to it (in addition to the Pentasa)?

Right now it's just the Pentasa + Entocort. Im responding reasonably well. 65-70% effective. I still have bad days, but I think that's the nature of the beast. Unfortunately, I have yet to achieve a "true" remission (symptom free). Right now, I'm riding a High. Never know how long that lasts.

I'll be on Entocort + Pentasa a Year as I don't see GI doctor until April 2017. I think at that time, he'll reassess the game plan. He knows that I can take a turn in a moments notice. It doesn't take long for my weight, potassium, and everything to plummet if my Crohn's goes out of wack.

I also get Kidney Stones galore as a side effect. More surgeries there than can count. Far as Crohn's, I guess I'm "lucky". No real remission but I also have all my intestines.

I think the GI doctor's main concern is treating the erosions. Originally, I was diagnosed with Crohns 4 years ago based upon Symptoms and Abnormal test results, but there was never 100% definitive. However, he was pretty darn certain and treated me as such.

When on this past colonoscopy it showed erosions, the GI pretty much said, well there goes any doubt that might have existed. My Diagnosis was then upgraded to Crohn's with Complications. Aren't I lucky!

 

[aypues]

I've never been able to get myself in any sort of long term remission. It's more managing symptoms through medication. So I wonder if Entocort will stay effective for long term use and if people who have used more than 1 yr at 9mg had any major affects from the prolonged usage.

That's because Entocort isn't approved for use in maintaining remission. I was on it for years to control symptoms and just kind of "get by" basically. It's a band aid. I had a crap doctor who was burned out and not up to date on the latest research. Long term remission involves some degree of immunosupression. Entocort isn't strong enough for this, but it is good in a pinch. You need a biologic and immunosuppressant for long term results that don't end up in osteoporosis or worse. Biologics have their own risks and costs, but for most people they are effective and worth it.