Hi all,
I've been making great progress on my recovery, going down to only 1 pill/day. As background, I've been on Entocort for a full year. Every time I tried to taper down I had problems, but with some diet changes, I am now trying to get off altogether.
My question: did anyone else experience "withdrawal" symptoms (other than GI issues) when you taper? I've been following a pattern where I take a pill a day for 2 days, then take no pill for 1 day, then repeat. Every time I go down to no pill for a day, I have strong headaches all day, and am very, very tired come early afternoon. It's no fun. Just curious if this is normal (or even related to the Entocort), and if it goes away after I finally get off the drug for good.
As always, I really appreciate your insight.
Is there such a thing as budesonide/Entocort withdrawal?
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Hi Brian,
I see that no one has responded to this post, so I'll offer my opinion. Typically, when taken for short periods (several months or so), or when the dosage is tapered, as you have done, withdrawal symptoms from a budesonide treatment regimen are very rare. That isn't the case with the other corticosteroids, such as prednisone. Withdrawal symptoms are rather common with them, especially if the taper is too abrupt. But only roughly 20 % of budesonide is absorbed into the bloodstream, so normally, unless it's taken for long periods (over a year, more or less), withdrawal (even somewhat abruptly) does not cause adrenal symptoms.
But some individuals are much more sensitive than others to certain medications. We have had a handful of members who could take no more than 1 capsule per day without having severe side effects. But at 1 capsule (3 mg) per day, the medication was very effective at suppressing symptoms for those particular individuals. We have one member in Belgium who was told by her gastroenterologist to stop taking budesonide cold turkey after she had been taking it for more than a year. She experienced severe withdrawal symptoms and she had to be given daily cortisol treatments in order to mitigate life-threatening issues caused by the damage to her adrenals. We haven't heard from her for a long time, but if I recall correctly, she may have to take a cortisol supplement for the rest of her life because of her doctor's mistake. Differences in sensitivity levels is why I consider tapering the dose to be a prudent choice, even when it is taken for shorter periods of time.
But the main reason why we recommend a long, slow taper for budesonide treatment regimens is to prevent a relapse of symptoms due to the mast cell rebound effect that occurs when any corticosteroid treatment is discontinued.
All that said, the issues/symptoms you describe are atypical for a tapered withdrawal from a budesonide treatment. But it sure sounds to me as though your symptoms are indeed associated with withdrawal from your budesonide treatment program. The problem is, unless you have been taking a corticosteroid for many years, you shouldn't be having those withdrawal symptoms. Theoretically it can't happen. Consequently, I have no idea how to advise you.
The withdrawal symptoms from prednisone (for example) can last for several months, though they usually begin to slowly diminish after about a month. Withdrawal symptoms from budesonide (when the dose is being slowly tapered) are so rare that this amounts to uncharted waters.
But something else might be at play here — such as a cortisol deficiency. It might help to check your hypothalamic–pituitary–adrenal (HPA) axis lab markers. The hypothalamus, the pituitary gland, and the adrenal glands constitute a major neuroendocrine system. By utilizing feedback from one another they interdependently regulate reactions to stress and many body processes, including digestion, the immune system, mood and emotions, the production and regulation of sex hormones, energy storage, and energy consumption. A good internist could order those tests and interpret the results, probably as well as (or better than) an endocrinologist. I believe that if I were in that situation I would have my HPA axis function checked out, just to make sure that everything is in order there.
I'm sorry that I couldn't be more helpful.
Tex
I see that no one has responded to this post, so I'll offer my opinion. Typically, when taken for short periods (several months or so), or when the dosage is tapered, as you have done, withdrawal symptoms from a budesonide treatment regimen are very rare. That isn't the case with the other corticosteroids, such as prednisone. Withdrawal symptoms are rather common with them, especially if the taper is too abrupt. But only roughly 20 % of budesonide is absorbed into the bloodstream, so normally, unless it's taken for long periods (over a year, more or less), withdrawal (even somewhat abruptly) does not cause adrenal symptoms.
But some individuals are much more sensitive than others to certain medications. We have had a handful of members who could take no more than 1 capsule per day without having severe side effects. But at 1 capsule (3 mg) per day, the medication was very effective at suppressing symptoms for those particular individuals. We have one member in Belgium who was told by her gastroenterologist to stop taking budesonide cold turkey after she had been taking it for more than a year. She experienced severe withdrawal symptoms and she had to be given daily cortisol treatments in order to mitigate life-threatening issues caused by the damage to her adrenals. We haven't heard from her for a long time, but if I recall correctly, she may have to take a cortisol supplement for the rest of her life because of her doctor's mistake. Differences in sensitivity levels is why I consider tapering the dose to be a prudent choice, even when it is taken for shorter periods of time.
But the main reason why we recommend a long, slow taper for budesonide treatment regimens is to prevent a relapse of symptoms due to the mast cell rebound effect that occurs when any corticosteroid treatment is discontinued.
All that said, the issues/symptoms you describe are atypical for a tapered withdrawal from a budesonide treatment. But it sure sounds to me as though your symptoms are indeed associated with withdrawal from your budesonide treatment program. The problem is, unless you have been taking a corticosteroid for many years, you shouldn't be having those withdrawal symptoms. Theoretically it can't happen. Consequently, I have no idea how to advise you.
The withdrawal symptoms from prednisone (for example) can last for several months, though they usually begin to slowly diminish after about a month. Withdrawal symptoms from budesonide (when the dose is being slowly tapered) are so rare that this amounts to uncharted waters.But something else might be at play here — such as a cortisol deficiency. It might help to check your hypothalamic–pituitary–adrenal (HPA) axis lab markers. The hypothalamus, the pituitary gland, and the adrenal glands constitute a major neuroendocrine system. By utilizing feedback from one another they interdependently regulate reactions to stress and many body processes, including digestion, the immune system, mood and emotions, the production and regulation of sex hormones, energy storage, and energy consumption. A good internist could order those tests and interpret the results, probably as well as (or better than) an endocrinologist. I believe that if I were in that situation I would have my HPA axis function checked out, just to make sure that everything is in order there.
I'm sorry that I couldn't be more helpful.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Double thanks! I am on one budesonide a day and would like to stop taking it altogether, however, on just the one pill some symptoms are back. Are vague symptoms, including morning headaches, dizziness, tinnitus, hunger, sromach, back and arthritis pain caused by the MC disease? If so, will they eventually dissipate after I am off the budesonide or will they just continue to get worse? I am concerned that I might do more damage to unhealed tissue. Maybe I should go back on two pills a day. Thank you so much for any consideration you might give to this issue. I am pretty sure that my doctors do not know much about this disease. 
Linda
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Gabes-Apg
- Emperor Penguin
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Linda
did you make diet and lifestyle changes while taking budesonide?
do you take Vit D3? take/use Magnesium?
some other discussions about budenside and tapering that you might be interested in
http://perskyfarms.com/phpBB2/viewtopic.php?t=22060
http://perskyfarms.com/phpBB2/viewtopic.php?t=12662
http://perskyfarms.com/phpBB2/viewtopic.php?t=21512
http://perskyfarms.com/phpBB2/viewtopic.php?t=22367
did you make diet and lifestyle changes while taking budesonide?
do you take Vit D3? take/use Magnesium?
some other discussions about budenside and tapering that you might be interested in
http://perskyfarms.com/phpBB2/viewtopic.php?t=22060
http://perskyfarms.com/phpBB2/viewtopic.php?t=12662
http://perskyfarms.com/phpBB2/viewtopic.php?t=21512
http://perskyfarms.com/phpBB2/viewtopic.php?t=22367
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Linda,
To answer your question, yes, if you are still having symptoms that include diarrhea, stopping the drug will probably make the symptoms worse. However, if some of those symptoms are side effects of the drug itself, then those symptoms may become worse if you increase the dose. The main reason for taking budesonide is diarrhea. If you do not have diarrhea, then you would probably be better off without the budesonide.
Back and arthritis pain are often symptoms of food sensitivities (which are part of MC), but symptoms such as headaches, dizziness, tinnitus, hunger, can be side effects of budesonide.
Tex
To answer your question, yes, if you are still having symptoms that include diarrhea, stopping the drug will probably make the symptoms worse. However, if some of those symptoms are side effects of the drug itself, then those symptoms may become worse if you increase the dose. The main reason for taking budesonide is diarrhea. If you do not have diarrhea, then you would probably be better off without the budesonide.
Back and arthritis pain are often symptoms of food sensitivities (which are part of MC), but symptoms such as headaches, dizziness, tinnitus, hunger, can be side effects of budesonide.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.