Hi, I know there are a lot of posts on this topic, so I'm really sorry it this is repetitive. I was on entocort for 9 months and started tapering to 6 mg 11 days ago. I was ok at first, but have had diarrhea for the past three days. My doctor told me to just go back on 9mg, but I'd really love to try to continue tapering (my last sigmoidoscopy showed that the inflammation had healed). Any advice about whether to suffer through the diarrhea with the hope that my body will adjust or to just go back on the full dose? Hope do you tell the difference between entocort withdrawal and a flare up of symptoms? Has anyone tried alternating between 6 and 9 mg during tapering?
Thank you!
Entocort tapering
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Hi Miriam,
Encountering a relapse of symptoms while still on a relatively high dose of Entocort is not a good sign, but in the event that it is due to a histamine problem, if I were in that situation I would try taking an antihistamine or 2, and I would reduce my intake of high-histamine foods. Many members here take a non-drowsy antihistamine (such as Claritin Redi-Tabs or Allegra) in the morning, and a Benedryl at night, if the morning antihistamine alone does not provide 24-hour control. The Benedry; will also help as a sleep aid. The reason why most members choose Claritin Redi-Tabs over the regular version is because the regular version of Claritin contains lactose.
If one or more antihistamines don't resolve the problem though, you may have to heed your doctors advice, at least for a while. You are fortunate to have a doctor who is willing to prescribe Entocort for medium to long-term use.
You're very welcome,
Tex
Encountering a relapse of symptoms while still on a relatively high dose of Entocort is not a good sign, but in the event that it is due to a histamine problem, if I were in that situation I would try taking an antihistamine or 2, and I would reduce my intake of high-histamine foods. Many members here take a non-drowsy antihistamine (such as Claritin Redi-Tabs or Allegra) in the morning, and a Benedryl at night, if the morning antihistamine alone does not provide 24-hour control. The Benedry; will also help as a sleep aid. The reason why most members choose Claritin Redi-Tabs over the regular version is because the regular version of Claritin contains lactose.
If one or more antihistamines don't resolve the problem though, you may have to heed your doctors advice, at least for a while. You are fortunate to have a doctor who is willing to prescribe Entocort for medium to long-term use.
You're very welcome,
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.
Re: Entocort tapering
Hi Miriam,
I wonder if you have any foodsensitivities; they are not on your profile. I used entocort for 4 years and it didn't help anymore. 5 weeks ago I started glutenfree to find out if this should be helpfull and it really was! After 3 days it was dramatically clear! 2 weeks ago I discontinued entocort and evrything is ok so far!
So, if you don't know about your possible foodsensitivities, I can really advise you to eat glutenfree for some weeks and see what happens.
good luck,
Sonja
I wonder if you have any foodsensitivities; they are not on your profile. I used entocort for 4 years and it didn't help anymore. 5 weeks ago I started glutenfree to find out if this should be helpfull and it really was! After 3 days it was dramatically clear! 2 weeks ago I discontinued entocort and evrything is ok so far!
So, if you don't know about your possible foodsensitivities, I can really advise you to eat glutenfree for some weeks and see what happens.
good luck,
Sonja
Thanks, I've actually been eating gluten free for the past 11 years (I have celiac disease). It's a bit confusing because the symptoms I'm having now are different than my symptoms prior to taking entocort (different type of diarrhea and stomach cramping), which makes me think this is steriod withdrawal rather than a relapse. I've had strong reactions to stopping and starting meds in the past. Any idea how to tell the difference or any way of treating steriod withdrawal symptoms?
Hi Miriam,
Some things to think about:
1. Eliminate dairy (including yogurt) and soy and possibly eggs before next step down.
2. Are you taking any other prescription drugs. Some will prevent remission. Suggest talk with Tex if so.
3. Consider eliminate OTC supplements for awhile during step downs.
4. In your shoes for step down I would probably do: 3,3,3 for awhile; 3,3,2 for awhile; 3,2,2 for a good long while, then 2,2,2 for awhile,
2,2,1 for awhile, 2,1,1 for awhile, 1,1,1 for a good long while, then 1,1,none for awhile etc.
Lilja just posted a link on good low end taper.
Brandy
It would probably be difficult to know. (I was an Entocort user.)Hope do you tell the difference between entocort withdrawal and a flare up of symptoms?
Not me but since I've been on here we've had several who were sensitive to step downs.Has anyone tried alternating between 6 and 9 mg during tapering?
Some things to think about:
1. Eliminate dairy (including yogurt) and soy and possibly eggs before next step down.
2. Are you taking any other prescription drugs. Some will prevent remission. Suggest talk with Tex if so.
3. Consider eliminate OTC supplements for awhile during step downs.
4. In your shoes for step down I would probably do: 3,3,3 for awhile; 3,3,2 for awhile; 3,2,2 for a good long while, then 2,2,2 for awhile,
2,2,1 for awhile, 2,1,1 for awhile, 1,1,1 for a good long while, then 1,1,none for awhile etc.
Lilja just posted a link on good low end taper.
Brandy
Miriam,
Brandy's suggestions are right on target. It's certainly possible that you might be having withdrawal symptoms from Entocort, but it's extremely unusual to be having them so early in the tapering process. You may be more sensitive to budesonide than most of us, but symptoms so early in the tapering process suggests additional food (or drug) sensitivities. The problem with withdrawal symptoms is that they are not just simple side effects — they tend to develop into a full flare in many cases.
Corticosteroids apparently work by synergistically promoting the expression of vitamin D receptors, and the VDRs suppress mast call numbers and mast cell activity, and that reduces the inflammation. But when the corticosteroids are withdrawn, there is usually a rebound effect as mast cell numbers repopulate and reactivate, and the rebound usually overshoots the original level to cause significant symptoms (a relapse of MC in many cases).
That's why we use antihistamines when withdrawing from Entocort (to suppress the mast cell rebound). If we don't suppress the mast cell activity (or otherwise prevent it from escalating), the inflammation will continue to propagate until we're back to square 1.
Tex
Brandy's suggestions are right on target. It's certainly possible that you might be having withdrawal symptoms from Entocort, but it's extremely unusual to be having them so early in the tapering process. You may be more sensitive to budesonide than most of us, but symptoms so early in the tapering process suggests additional food (or drug) sensitivities. The problem with withdrawal symptoms is that they are not just simple side effects — they tend to develop into a full flare in many cases.
Corticosteroids apparently work by synergistically promoting the expression of vitamin D receptors, and the VDRs suppress mast call numbers and mast cell activity, and that reduces the inflammation. But when the corticosteroids are withdrawn, there is usually a rebound effect as mast cell numbers repopulate and reactivate, and the rebound usually overshoots the original level to cause significant symptoms (a relapse of MC in many cases).
That's why we use antihistamines when withdrawing from Entocort (to suppress the mast cell rebound). If we don't suppress the mast cell activity (or otherwise prevent it from escalating), the inflammation will continue to propagate until we're back to square 1.
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.
I agree. You probably have other food sensitivities that were being masked by the Entocort. When I tapered to a lower dose, that's when I found that I was reacting to soy and peanut butter ( legume). If you are not already off of dairy and soy, I would seriously think of doing that… or take the Enterolab tests to know for sure.
I also take antihistamines and they do a seem to help a lot.
Good luck
Leah
I also take antihistamines and they do a seem to help a lot.
Good luck
Leah