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 - 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.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.
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 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.
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.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???
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.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.
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.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.
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.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.
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?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.