Budesonide and remission

[swimbikerun]

I have read several things about Budesonide that have left me confused. Is it possible for Budesonide to put you in remission from mild Crohn's and then for no other medication to be needed? Or do you always have to be on medication for Crohn's?

 

[Scipio]

The answer IMO is "maybe." It depends on how mild the mild disease is. One 2-month course of budesonide put me into a durable remission for over a year and half now and counting. My only symptoms are bouts of very mild pain lasting only a day or two. Before the budesonide my bouts of pain used to be worse and drag on for 1 to 3 months. I may need more medication in the future, but for now the remission is holding. If your disease is very mild and responds well to budesonide this may happen for you as well.

On the other hand if your "mild" disease is actually kind of borderline moderate disease then you will likely relapse shortly after the budesonide is discontinued, and thus you will likely need to be on something more or less all the time.

 

[ronroush7]

My understanding was that people with Crohns Disease always need to be on some type of medication.

 

[swimbikerun]

The answer IMO is "maybe." It depends on how mild the mild disease is. One 2-month course of budesonide put me into a durable remission for over a year and half now and counting. My only symptoms are bouts of very mild pain lasting only a day or two. Before the budesonide my bouts of pain used to be worse and drag on for 1 to 3 months. I may need more medication in the future, but for now the remission is holding. If your disease is very mild and responds well to budesonide this may happen for you as well.

On the other hand if your "mild" disease is actually kind of borderline moderate disease then you will likely relapse shortly after the budesonide is discontinued, and thus you will likely need to be on something more or less all the time.

Scipio - Did you do anything else while on bedesonide to help along the process? Diet? Exercise? Anything? I know it is a long shot but would like to give it a fighting chance. My DR has put me on it for 30 day's and then wants to pull me off cold turkey to "see what happens." I'm not sure that is long enough to give it a chance but have nothing to compare to at this point. I saw almost immediate change when I started taking it but am not at 100% no pain/discomfort yet and I am 16 days in. Comes and goes.

 

[Scipio]

"Cold turkey?" Does he mean without any taper? Normally the full dose is 9 mg/day that gets tapered to 6 mg/day to 3 mg/day over a period of a few weeks. Most of what I've read about corticosteroids recommends against going straight from a high dose to zero with no taper.

I did not do any special exercise or eat any special diet when on the drug other than avoiding grapefruits (which I love), since budesonide is one of the dozens of drugs that grapefruit consumption interferes with.

 

[swimbikerun]

Yes, cold turkey. I have read the same things you have and am concerned about that as well but the pharmacists says shouldn't be an issue after only 30 days. My guess is that I will deteriorate quickly as I still can't kick the pain 100%. Feel good for a couple of days and then feel horrible.

Thanks for the response. I guess it works if it works.

 

[aypues]

the tapering isn't as critical with Entocort because most of it is filtered out and not systemically absorbed leading to adrenal suppression that would normally happen with Prednisone. However, tapering may be beneficial to gauge how your disease will react to a lower dose. It's not a maintenance drug because it can't control chronic disease, only short flares.

You'll need an immunosuppressive therapy as well. Most people can't be on nothing. You'll have this forever, so you don't want the disease to go on unchecked even if you think you feel ok, the disease is always there in the background doing damage. Once the damage is done it is usually irreversible without surgery, so now doctors treat the disease aggressively to change the natural course of the disease to prevent complications.

 

[swimbikerun]

the tapering isn't as critical with Entocort because most of it is filtered out and not systemically absorbed leading to adrenal suppression that would normally happen with Prednisone. However, tapering may be beneficial to gauge how your disease will react to a lower dose. It's not a maintenance drug because it can't control chronic disease, only short flares.

You'll need an immunosuppressive therapy as well. Most people can't be on nothing. You'll have this forever, so you don't want the disease to go on unchecked even if you think you feel ok, the disease is always there in the background doing damage. Once the damage is done it is usually irreversible without surgery, so now doctors treat the disease aggressively to change the natural course of the disease to prevent complications.

Thanks aypues. Here's a thought. Why don't they go straight to surgery if the disease is contained? It seems that many people end up there anyway after of years of off and on problems and flares. For instance, the only thing showing up for me is 2 small ulcers in the terminal ileum. Why not remove that area and therefore possibly remove the disease? It seems that the path of putting someone on meds that reduce their immune system and screw with other things in their body is just a slow painful path to eventual surgery with a more widespread disease that then cannot really ever be controlled. It seems that the standard in most health issues (including crohn's) that are not life threatening is to delay surgery until there is no other choice. By that point the body in question is tired and not robust after years of battling an illness. So why not go aggressive, remove the problem while the body is still not worn down and hopefully capable of healing faster? I am having a lousy few days and may be a little cranky so forgive the tone but the thought is real. Why not get this obnoxious disease out of me now???

 

[Scipio]

Thanks aypues. Here's a thought. Why don't they go straight to surgery if the disease is contained? It seems that many people end up there anyway after of years of off and on problems and flares. For instance, the only thing showing up for me is 2 small ulcers in the terminal ileum. Why not remove that area and therefore possibly remove the disease? It seems that the path of putting someone on meds that reduce their immune system and screw with other things in their body is just a slow painful path to eventual surgery with a more widespread disease that then cannot really ever be controlled. It seems that the standard in most health issues (including crohn's) that are not life threatening is to delay surgery until there is no other choice. By that point the body in question is tired and not robust after years of battling an illness. So why not go aggressive, remove the problem while the body is still not worn down and hopefully capable of healing faster? I am having a lousy few days and may be a little cranky so forgive the tone but the thought is real. Why not get this obnoxious disease out of me now???

The reason they don't do surgery and remove the lesions right away is because that wouldn't be a cure. The disease almost always comes back after surgery, often around the edges of the area that got the surgery or sometimes elsewhere in the gut. This is because Crohn's is a systemic disease, potentially affecting the whole body, and is not just confined to the visible lesions.

Once you cut out a chunk of the gut it's gone and cannot be brought back. Thus, surgery is a sort of a last resort - for when the damaged tissue can no longer be saved or repaired through medicine. The only thing left to do to relieve the suffering at that point is to take the affected part out.

Permanently removing broken parts of your car's engine may get rid of the broken parts, but it is also certainly going to make it run worse. If enough gets removed eventually it won't run at all. Thus when trouble arises you try to preserve function by repairing the broken part rather than removing it. It's the same with your gut. You want to minimize removing pieces of it in order to preserve long term function.

 

[Scipio]

One thing I should add about the surgery is that surgery can be a cure for UC, because by definition UC is confined to the large bowel. So if you remove the entire large bowel then, again by definition, the UC is cured. Of course removal of such a large piece of your digestive system has serous consequences and is not often done. But it may be an option for the very worst cases.

And this approach is feasible because you can live without a large bowel. You cannot live without a small bowel. So this strategy of radical removal of the affected and potentially affected areas does not apply to Crohn's, since in Crohn's the potentially affected area of the gut extends from mouth to anus and everything in between. With Crohn's your surgery options are more limited.

 

[DEmberton]

I was put on Budesonide as a precursor to Aza. The idea being that the Budesonide would kill off the inflammation and Aza would keep it away.

Perhaps the reason the doctor wants you to try it is to test whether your symptoms are being caused by inflammation in the area Budesonide treats.

 

[Maya142]

the tapering isn't as critical with Entocort because most of it is filtered out and not systemically absorbed leading to adrenal suppression that would normally happen with Prednisone. However, tapering may be beneficial to gauge how your disease will react to a lower dose. It's not a maintenance drug because it can't control chronic disease, only short flares.

Tapering is important with Entocort too. My daughter recently developed Cushing's Syndrome. She has been on Entocort for over a year because we couldn't get her into remission (with a break in between for three months of Prednisone). In the last 2 months we added a low dose of Medrol with the Entocort because the Entocort by itself wasn't doing enough.

We were sent to a endocrinologist because my daughter (who is naturally very thin and has been so underweight in the past that she has a feeding tube) gained weight very rapidly, had an incredibly round and puffy face, was retaining water (swollen ankles every night), had a flushed face and had purple stretch marks all over her body (thighs, calves, belly etc).

When we saw the endo, he commented that GIs use Entocort too freely - that it isn't fully absorbed systemically, but some part of it is. 9 mg of Entocort is like taking 40 mg of Prednisone. And, if you are female, being on birth control makes it even more potent.

He said often GIs don't taper Entocort which is a problem and they keep people on it for a year or more which can lead to osteoperosis and other complications.

It is much LESS harmful than Medrol or Prednisone, but it's still a steroid. I thought it wasn't a big deal that my kiddo had been on Entocort for so long, but it turns out, it was a big deal (though of course, the Cushing's is from the combination of Pred/Medrol and Entocort and the past five years of on and off steroid use).

Anyway, there is nothing we can really do about the Cushing's - just wait. She is losing the weight slowly and the stretch marks are fading. Now we cannot put her on steroids lightly - she has to REALLY, REALLY need them. We really need to avoid them whenever possible.

She is also at risk for adrenal suppression since her adrenal glands have been "asleep" for such a long time. Her first ACTH test was low and we are re-testing next week to see if she actually has adrenal insufficiency.

I just wanted to put this out there because maintenance medications are SO important. Trying to control Crohn's with just steroids can be very harmful.

We knew all of this, but because of certain circumstances she ended up on steroids anyway...and now we are paying the price.

 

[teeny5]

I was on Entocort which did help me get into remission, but even in remission I still take meds. My GI said I will minimally need to take maintenance meds always, for the rest of my life. Kind of a bummer, but better than being in a flare always. My understanding is the meds I am on now just keep things calm. When the gut gets angry he ups my meds...so far Entocort has been enough to settle everything down again. But, I have heard that over time your body may not respond to the same meds. It is different for everyone though.

 

[aypues]

Like the pharmacist said, because the course was under 30 days the tapering wasn't a concern.

Tapering is for people on the drug for extended intervals which can then have a systemic effect. I was on it 5 years and tapered down many times. No bueno. Didn't really control the disease either and have osteopenia now.

 

[DEmberton]

Like the pharmacist said, because the course was under 30 days the tapering wasn't a concern.

Tapering is for people on the drug for extended intervals which can then have a systemic effect. I was on it 5 years and tapered down many times. No bueno. Didn't really control the disease either and have osteopenia now.

I've been on it twice, and both times it was 9mg for 28 days, 6mg for 28 days, and 3mg for 28 days. Some doctors obviously think tapering is important.

 

[swimbikerun]

Interesting. I am obviously just learning about all this stuff but it would seem to me that Dr's would go with a taper, regardless. That way anyone who WOULD have an adverse reaction otherwise would be less likely to and those who would NOT have an adverse reaction would suffer no damage as well. Unless of course such a short course could possibly have all the other bad complications that come with steroids, thereby making the argument the sooner off the better.

 

[swimbikerun]

The answer IMO is "maybe." It depends on how mild the mild disease is. One 2-month course of budesonide put me into a durable remission for over a year and half now and counting. My only symptoms are bouts of very mild pain lasting only a day or two. Before the budesonide my bouts of pain used to be worse and drag on for 1 to 3 months. I may need more medication in the future, but for now the remission is holding. If your disease is very mild and responds well to budesonide this may happen for you as well.

On the other hand if your "mild" disease is actually kind of borderline moderate disease then you will likely relapse shortly after the budesonide is discontinued, and thus you will likely need to be on something more or less all the time.

Scipio - how do we know if the budesonide worked? Without doing another colonoscopy how do they know that it worked on the ulcers I had? I'm suppose to come off in two days. Still no taper in sight though I suggested this to my primary care dr and she agreed I should taper not go cold turkey. The GI dr is now trying to get me to take carafate as well since I do not seem to tolerate rx zantac too well but for the life of me I do not understand why. ALL my pain is outside my gut.

 

[Scipio]

There is not an easy answer to your question. Ideally, you can tell whether the drug worked by relief of the symptoms. But in the case of Crohn's the symptoms do not always match the actual state of the gut. You could just monitor success or failure by return (or not) of the symptoms. But to fully assess whether the gut mucosa is completely healed you would need to do another endoscopy - either capsule camera or traditional colonoscopy, depending on which would be best to visualize the ulcers in question.

I've never heard of anyone taking Carafate for Crohn's before. Do you have duodenal ulcers or duodenal inflammation? I don't know Carafate very well, but my understanding is that it is for coating and soothing the duodenum.

As for not tolerating xanatac, has the doc tried you on a PPI instead? PPIs such as omeprazole or Nexium are common choices. I take omeprazole myself.

 

[swimbikerun]

There is not an easy answer to your question. Ideally, you can tell whether the drug worked by relief of the symptoms. But in the case of Crohn's the symptoms do not always match the actual state of the gut. You could just monitor success or failure by return (or not) of the symptoms. But to fully assess whether the gut mucosa is completely healed you would need to do another endoscopy - either capsule camera or traditional colonoscopy, depending on which would be best to visualize the ulcers in question.

I've never heard of anyone taking Carafate for Crohn's before. Do you have duodenal ulcers or duodenal inflammation? I don't know Carafate very well, but my understanding is that it is for coating and soothing the duodenum.

As for not tolerating xanatac, has the doc tried you on a PPI instead? PPIs such as omeprazole or Nexium are common choices. I take omeprazole myself.

It's hard to tell if the "symptoms" have gone away. I seem to have soooo many that are not connected to the gut. In fact, all seem to not be connected to the guy. The only ones that seem to be positively impacted are feet and hand pain in the a.m. but that could simply be arthritis, right? Though I have never had it before this, whatever it is sickness. But steroids can help that without having anything to do with crohn's, correct?

As to duodenal ulcers or inflammation, no. Just the ulcers in terminal ileum.

My GP (not gastro) gave me about 12 days of samples of nexium 24 hour pills. Seemed to help...with something. But again, hard to put my finger on what. Just know I felt some general overall relief but not 100% pain free. My gastro dr just shoots my pharmacy a prescription and then tells me after the fact to take it. No explanation, no discussion. As I have indicated elsewhere I am looking for a new gastro dr. This one simply doesn't work for me.