I end a six week 9mg/day course of Entocort tomorrow. javascript:emoticon(':eek:')It was my first and made some great improvements (hardly perfect but positive). That said, I also found myself with occasional nausea and I am having a vision issue that has only arisen in this period (as a photographer this isn't good) so I assume it is the meds. This vision symptom began recently and I only put the two together today. I actually thought I was having lens issues when shooting.
About one week after I began Entocort I received my Entero results and am now gluten/soy/egg and dairy free. With so many variables, I find it tricky to know what has brought the most help. Things are moving in the right direction but as my GI said kindly, after 17 years of this I need to give my body time. Not sure why he wants to end the Entocort now. He has a specialization in MC, IBD, Celiac, and that is why I began seeing him. For a smart girl I somehow forgot to ask that question. I figure this will all be a game of wait and see.
I'm wondering if there are withdrawal symptoms beyond GI issues that people have noticed? I haven't read of anything on the boards but there is a treasure trove of info here and perhaps I've missed something? I'm a little scared but I also believe that the dietary changes could have played as much a role these last 5 of the 6 weeks. Wait and see, right?
Hope you're all having a great weekend,
Alexandra
end entocort treatment tomorrow...nervous
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alexandraCA
- Posts: 24
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- Location: Los Angeles, CA
The two times I took it I was weaned down rather than an abrupt stop. That is the normal protocol with any steriod use. I'm surprised that your GI wants you to stop cold turkey. I would suggest you call his office and inquire about stepping down and get a new prescription.
Jan
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
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alexandraCA
- Posts: 24
- Joined: Mon May 25, 2009 4:39 pm
- Location: Los Angeles, CA
thank jan
Entocort is nonsystemic, unlike many other steroids, and so I believe this is why it is safe to simply end a treatment period as opposed to taper off (perhaps not after long term treatment).I am also concerned about the vision issue, which if connected I am told would mean he'd have me stop immediately (oh, the irony). I will email him tonight about talking Monday(he's quick to respond to emails, easier than messages left with his front desk). Hope to talk to him Monday morning.
a.
a.
Hi Alexandra,
Are you saying that he has you stopping the treatment cold turkey - from 9mg per day tomorrow, to nothing, the next day? As Jan suggested, that's kind of a poor procedure. It's not necessarily risky, (at the 6-week point), it's just not a good practice, from a patient safety viewpoint, for patients who might happen to absorb more than the "normal" amount of budesonide. Actually Entocort is not exactly non-systemic. 10 to 15% is absorbed into the bloodstream, so it is 10 to 15% systemic, and possibly more so, for patients whose digestive system happens to break down the enteric coating, faster than the norm.
Theoretically, you shouldn't have adrenal dependence with just a 6 week treatment period, but it's always rather poor protocol to end a corticosteroid treatment regimen without tapering the treatment over a period of several weeks, at least. He probably wants to end the treatment now, because that's what the label says to do. If that's the case, then he probably doesn't know as much about treating MC as he thinks he does. He'll probably suggest Asacol, or one of the other 5-ASA meds, unless he actually thinks that you are "cured". If he thinks that you should be "cured" at this point, then he obviously knows very little about treating MC.
It's not likely that you have been on the diet long enough to maintain remission by diet alone, at this point, but it's not impossible, either. You might be a fast responder. You will probably know in less than a week.
It's certainly possible that you may be having vision effects from the Entocort, because the members of this board have found that symptom to be much more common than the trial data suggests. If so, then it probably wouldn't be advisable to continue taking Entocort over the long term. Sometimes a lower dose, will reduce or eliminate such side effect symptoms.
Thanks for the update, and good luck.
Tex
Are you saying that he has you stopping the treatment cold turkey - from 9mg per day tomorrow, to nothing, the next day? As Jan suggested, that's kind of a poor procedure. It's not necessarily risky, (at the 6-week point), it's just not a good practice, from a patient safety viewpoint, for patients who might happen to absorb more than the "normal" amount of budesonide. Actually Entocort is not exactly non-systemic. 10 to 15% is absorbed into the bloodstream, so it is 10 to 15% systemic, and possibly more so, for patients whose digestive system happens to break down the enteric coating, faster than the norm.
Theoretically, you shouldn't have adrenal dependence with just a 6 week treatment period, but it's always rather poor protocol to end a corticosteroid treatment regimen without tapering the treatment over a period of several weeks, at least. He probably wants to end the treatment now, because that's what the label says to do. If that's the case, then he probably doesn't know as much about treating MC as he thinks he does. He'll probably suggest Asacol, or one of the other 5-ASA meds, unless he actually thinks that you are "cured". If he thinks that you should be "cured" at this point, then he obviously knows very little about treating MC.
It's not likely that you have been on the diet long enough to maintain remission by diet alone, at this point, but it's not impossible, either. You might be a fast responder. You will probably know in less than a week.
It's certainly possible that you may be having vision effects from the Entocort, because the members of this board have found that symptom to be much more common than the trial data suggests. If so, then it probably wouldn't be advisable to continue taking Entocort over the long term. Sometimes a lower dose, will reduce or eliminate such side effect symptoms.
Thanks for the update, and good luck.
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.
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alexandraCA
- Posts: 24
- Joined: Mon May 25, 2009 4:39 pm
- Location: Los Angeles, CA
Tex,
He certainly doesn't think I am cured but I only began seeing him this last month, already a few weeks into the Entocort. Asacol didn't interest him but low dose tricyclic antidepressants seem to him a more promising possibility. While I have no reason yet to think he's better than most, I have to say he is quite receptive to what came from Entero which I never saw in my old GI. Even the concept of doing the tests was looked at as foolish by her. As for the Entocort, I believe he is going by the book in terms of treatment plan. But with so many Crohn's and colitis patients I would assume he wasn't an idiot...but I shouldn't assume anything.javascript:emoticon('
') Sorry, have to have doctor humor to keep some sanity in it all.
I don't think he sees MC as something medicine will cure per se, but aid in helping the damage that has been done. He looks at my history and is trying to piece the puzzle together. In addition to the MC dx this year, I had a cholestectomy in college (11 yrs ago) and the IBS-D was dx when I was 14. I'm glad I'm back at UCLA (the GI I saw here years before has diff. areas of focus) and hope he's a better fit than the doctor I was seeing in another Los Angeles practice. Wait and see, wait and see.
In the meantime, I will bring up the taper question and let you all know what he says. I guess this is test 2, the first being when I presented him my Entero results. Hopefully his reaction will be as encouraging.
He certainly doesn't think I am cured but I only began seeing him this last month, already a few weeks into the Entocort. Asacol didn't interest him but low dose tricyclic antidepressants seem to him a more promising possibility. While I have no reason yet to think he's better than most, I have to say he is quite receptive to what came from Entero which I never saw in my old GI. Even the concept of doing the tests was looked at as foolish by her. As for the Entocort, I believe he is going by the book in terms of treatment plan. But with so many Crohn's and colitis patients I would assume he wasn't an idiot...but I shouldn't assume anything.javascript:emoticon('
') Sorry, have to have doctor humor to keep some sanity in it all.I don't think he sees MC as something medicine will cure per se, but aid in helping the damage that has been done. He looks at my history and is trying to piece the puzzle together. In addition to the MC dx this year, I had a cholestectomy in college (11 yrs ago) and the IBS-D was dx when I was 14. I'm glad I'm back at UCLA (the GI I saw here years before has diff. areas of focus) and hope he's a better fit than the doctor I was seeing in another Los Angeles practice. Wait and see, wait and see.
In the meantime, I will bring up the taper question and let you all know what he says. I guess this is test 2, the first being when I presented him my Entero results. Hopefully his reaction will be as encouraging.
Alexandria,
I'm curious as to why he thinks that tricyclic antidepressants are a good choice for treating IBDs. While they may help with mental symptoms, research has not proven them to benefit the GI symptoms of IBDs. From the following article, for example, consider this quote:
http://www.cpementalhealth.com/content/2/1/24
They work to some extent for IBS, but IBS is not an IBD. There is no way that tricyclic antidepressants can control the inflammation present with MC. Paroxetine, bupropion, and phenelzine, are not tricyclic antidepressants, and they work by inducing constipation. They're a prophylactic treatment - they do not address the core of the problem with MC. IOW, it may make you think that you are better, but the inflammation will continue, and the intestinal damage will continue to accrue. The first one, (paraxetine), is known as Paxil, and it has actually caused MC, in some cases. A tricyclic antidepressant probably won't hurt you, since you are on the diet, but without the diet, your inflammation would continue unabated with a treatment based on the use of a tricyclic antidepressant. Some of our members who were not on the diet have tried some of these, generally without success.
At least that's the way I see it.
Tex
I'm curious as to why he thinks that tricyclic antidepressants are a good choice for treating IBDs. While they may help with mental symptoms, research has not proven them to benefit the GI symptoms of IBDs. From the following article, for example, consider this quote:
The term "somatic" refers to the body, (rather than the mind).Results
12 relevant publications were identified. All of them referred to non-randomised studies. Antidepressants reported in these publications included paroxetine, bupropion, amitriptyline, phenelzine, and mirtazapine. In 10 articles, paroxetine, bupropion, and phenelzine were suggested to be effective for treating both psychological and somatic symptoms in patients suffering from IBD. Amitriptyline was found ineffective for treating somatic symptoms of IBD. Mirtazapine was not recommended for IBD patients.
Conclusion
Although most of reviewed papers suggest a beneficial effect of treatment with antidepressants in patients with IBD, due to the lack of reliable data, it is impossible to judge the efficacy of antidepressants in IBD. Properly designed trials are justified and needed based upon the available uncontrolled data.
http://www.cpementalhealth.com/content/2/1/24
They work to some extent for IBS, but IBS is not an IBD. There is no way that tricyclic antidepressants can control the inflammation present with MC. Paroxetine, bupropion, and phenelzine, are not tricyclic antidepressants, and they work by inducing constipation. They're a prophylactic treatment - they do not address the core of the problem with MC. IOW, it may make you think that you are better, but the inflammation will continue, and the intestinal damage will continue to accrue. The first one, (paraxetine), is known as Paxil, and it has actually caused MC, in some cases. A tricyclic antidepressant probably won't hurt you, since you are on the diet, but without the diet, your inflammation would continue unabated with a treatment based on the use of a tricyclic antidepressant. Some of our members who were not on the diet have tried some of these, generally without success.
At least that's the way I see it.
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.
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alexandraCA
- Posts: 24
- Joined: Mon May 25, 2009 4:39 pm
- Location: Los Angeles, CA
Tri-cyclic antidepressants such as Elavil and Doxepin are not SSRIs like Paxil. The research that he shared on my last visit (and I will try to get something to share) is that low dose tri-cyc's, drugs that came decades before Paxil, help with neuro-modulation in the brain/gut axis. The dosage is at too low a level to be therapeutic as an antidepressant and their use is specific to the gut. New research finds it beneficial to MC. When I speak with him Monday I will ask him for documentation to share. Sorry I'm not more help than that. I crave information and hate when I can't answer...it's the Nancy Drew in me, I suppose.
Have a good weekend and I'll check in this week.
a.
Have a good weekend and I'll check in this week.
a.
Alexandria,
I understand what you're saying, and it is true that the tricyclic antidepressants often help with IBS. Yes, if there is any research that shows that tricyclic antidepressants can actually improve the mucosal histology of an IBD, (the physical damage to the mucosal cells, not just the clinical symptoms of the disease), I would very much like to see it. The article that I cited in the precious post, clearly concludes that "amitriptyline was found ineffective for treating somatic symptoms of IBD". Amitriptyline is Elavil. Most of the research data available, "suggest" benefits, but do not substantiate those claims.
At any rate, I'll be looking forward to learning something new, if your doctor can actually cite research documentation that shows that tricyclic antidepressants can restore intestinal mucosal histology, in MC patients.
Thanks, I appreciate the information, and I hope you have a great week, also.
Tex
I understand what you're saying, and it is true that the tricyclic antidepressants often help with IBS. Yes, if there is any research that shows that tricyclic antidepressants can actually improve the mucosal histology of an IBD, (the physical damage to the mucosal cells, not just the clinical symptoms of the disease), I would very much like to see it. The article that I cited in the precious post, clearly concludes that "amitriptyline was found ineffective for treating somatic symptoms of IBD". Amitriptyline is Elavil. Most of the research data available, "suggest" benefits, but do not substantiate those claims.
At any rate, I'll be looking forward to learning something new, if your doctor can actually cite research documentation that shows that tricyclic antidepressants can restore intestinal mucosal histology, in MC patients.
Thanks, I appreciate the information, and I hope you have a great week, also.
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.