Hello everyone!
I haven't been on here for a long time. I was diagnosed with lymphocytic colitis is aug 2012 and have been on 9mg of entocort since may 2013. I still have diarrhea every morning but the rest of the day I am fine. I stay away from gluten and processed foods etc. I have recently had a saliva adrenal test after being off entocort for 3 days and I have no cortisol first thing upon waking and the other 3 during the day were just above normal but my DHEA is still good. Naturopathic dr says I am lucky. she feels this entire mess is from my adrenals crashing after my hysterectomy sept 2011 and dog dying dec 2011 because I got sick 6 months later. but who knows right! sooo I need to get off my entocort so we can save my adrenals. I also have osteopenia at 50 and glaucoma starting. I have gained all my weight back which is good. so I need advice as my pharmacist says stay at 6 for 2months then reduce again.i have heard longer. any advice would be appreciated?
thxs
babs
hello!!! need help weaning off entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
hello!!! need help weaning off entocort
barb
IBS since 1989
Hysterectomy sept 2011
Lymphocytic colitis jan 2013
entocort 9mg since aprll 2013
ketotifen 3 mg since Nov2013
LDN since Nov 2013
IBS since 1989
Hysterectomy sept 2011
Lymphocytic colitis jan 2013
entocort 9mg since aprll 2013
ketotifen 3 mg since Nov2013
LDN since Nov 2013
Hi Babs,
Because we all respond to medications somewhat differently, it's difficult to know exactly what the best tapering program might be, but if I were in that situation, I would think that 2 months at 6 mg should be adequate. It's the later stages of the tapering process that seem to be the most critical. Usually, the body will adjust to the initial dosage reductions relatively easily, but as the doses become progressively smaller, the effects seem to be proportionally more significant, especially when the 3 mg every other day, 3 mg every third day, etc. stages are reached.
If you have zero cortisol before taking the budesonide each day, your adrenals have apparently ceased producing cortisol altogether. If that doesn't change when you begin tapering the dose, you may need a cortisol supplement on a daily basis. Probably though, they will begin working again, after the budesonide dose is reduced.
Yes, stress is not only tough on the adrenals, but it's also a major factor in the development of LC/MC, and it commonly causes relapses. Regarding the D — we have found that bile acid malabsorption is a common problem, not only with MC, but with D from any cause. If you are very carefully avoiding all of your food sensitivities and still having D, have you tried a bile acid sequestrant? Research shows that bile acid sequestrants are helpful not only when bile acid malabsorption is actually a problem (which is true in approximately 40 % of cases), but it also seems to stop the D in many other cases where bile acid malabsorption is not present.
And for many of us who have either itching, or signs of a rash or redness after eating, an antihistamine once or twice a day often stops the D. If an antihistamine is going to help, it will usually bring noticeable improvement within a day or so.
Good luck with your Entocort dosage tapering, and please keep us posted on your progress.
Tex
Because we all respond to medications somewhat differently, it's difficult to know exactly what the best tapering program might be, but if I were in that situation, I would think that 2 months at 6 mg should be adequate. It's the later stages of the tapering process that seem to be the most critical. Usually, the body will adjust to the initial dosage reductions relatively easily, but as the doses become progressively smaller, the effects seem to be proportionally more significant, especially when the 3 mg every other day, 3 mg every third day, etc. stages are reached.
If you have zero cortisol before taking the budesonide each day, your adrenals have apparently ceased producing cortisol altogether. If that doesn't change when you begin tapering the dose, you may need a cortisol supplement on a daily basis. Probably though, they will begin working again, after the budesonide dose is reduced.
Yes, stress is not only tough on the adrenals, but it's also a major factor in the development of LC/MC, and it commonly causes relapses. Regarding the D — we have found that bile acid malabsorption is a common problem, not only with MC, but with D from any cause. If you are very carefully avoiding all of your food sensitivities and still having D, have you tried a bile acid sequestrant? Research shows that bile acid sequestrants are helpful not only when bile acid malabsorption is actually a problem (which is true in approximately 40 % of cases), but it also seems to stop the D in many other cases where bile acid malabsorption is not present.
And for many of us who have either itching, or signs of a rash or redness after eating, an antihistamine once or twice a day often stops the D. If an antihistamine is going to help, it will usually bring noticeable improvement within a day or so.
Good luck with your Entocort dosage tapering, and please keep us posted on your progress.
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.
Not going so well at 3mg
So I have been slowly reducing since last time we spoke and for the last 2 months or more I have been at 3 mg daily and sometimes skipping a day. I ate an apple for the first time and some raw carrots and have had orangey yellow water coming out for a week now! I also now have a fissure so increased to 6 mg and no change so went to 9mg today and finally ate something without issues . I am getting glucoma and have osteopenia at 51 years of age! I have been on ketotifen and LDN for 3 years as well. Can apple and raw carrot cause this or a bug?
barb
IBS since 1989
Hysterectomy sept 2011
Lymphocytic colitis jan 2013
entocort 9mg since aprll 2013
ketotifen 3 mg since Nov2013
LDN since Nov 2013
IBS since 1989
Hysterectomy sept 2011
Lymphocytic colitis jan 2013
entocort 9mg since aprll 2013
ketotifen 3 mg since Nov2013
LDN since Nov 2013
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Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there Babs
yes, if you are still in the process of healing and/or have excess inflammation then yes the fibre content of apple and a carrot could easily cause a flare
(i personally am almost 7 years post Dx and can not do raw veges or salad items)
are you taking Vit D3 and magnesium?
From the experience of others over the years here are some thoughts on what is happening
- if you are deficient in things like Vit D3 then medications have limited scope of success..
- taking the entorcort for the long duration can also mean that over this time it has lost some of the effectiveness for you (hence why you had to return to the 9mg dose to get resolution of symptoms - you may want to investigate a different medication to help reduce the symptoms.
- what we have also learnt in the past 12-8 months is the importance of B6 (especially active form P5P) it helps with balancing histamine/mast cells etc.
- has there been any other major life events/changes?? ie increase of stress?, change of work or home environment? hormone changes? these type of events can a)increase inflammation levels and b) deplete key nutrients your body needs (ie the adrenals, etc)
what is the rest of your eating plan like? going back to a bland, low number of ingredients well cooked meals is very beneficial to reducing inflammation levels, are you having many high histamine food /drink items?
hope this helps
yes, if you are still in the process of healing and/or have excess inflammation then yes the fibre content of apple and a carrot could easily cause a flare
(i personally am almost 7 years post Dx and can not do raw veges or salad items)
are you taking Vit D3 and magnesium?
From the experience of others over the years here are some thoughts on what is happening
- if you are deficient in things like Vit D3 then medications have limited scope of success..
- taking the entorcort for the long duration can also mean that over this time it has lost some of the effectiveness for you (hence why you had to return to the 9mg dose to get resolution of symptoms - you may want to investigate a different medication to help reduce the symptoms.
- what we have also learnt in the past 12-8 months is the importance of B6 (especially active form P5P) it helps with balancing histamine/mast cells etc.
- has there been any other major life events/changes?? ie increase of stress?, change of work or home environment? hormone changes? these type of events can a)increase inflammation levels and b) deplete key nutrients your body needs (ie the adrenals, etc)
what is the rest of your eating plan like? going back to a bland, low number of ingredients well cooked meals is very beneficial to reducing inflammation levels, are you having many high histamine food /drink items?
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Barb,
Gabes is right on target. Raw vegetables will not work with active MC.
She's also on target with the vitamin D and magnesium recommendation. About 80 % of the general population has magnesium deficiency. The percentage for IBD patients is much higher because IBDs (including MC) deplete magnesium and so do many of the medications prescribed to treat IBDs and associated issues. So almost everyone who has an IBD is likely to be magnesium deficient.
And this is especially important in your case because both glaucoma and osteopenia/osteoporosis are associated with magnesium deficiency. Furthermore, magnesium is very important for treating those issues. Without adequate amounts of vitamin D and magnesium in the body, it doesn't matter how much calcium you take in because your body will be unable to convert it into new, healthy bone tissue. Vitamin D and magnesium are essential for building healthy bones.
Likewise, magnesium is important for preventing or treating glaucoma, as noted in the abstract quoted here from the research article at the following link.
I hope that some of this is helpful.
Tex
Gabes is right on target. Raw vegetables will not work with active MC.
She's also on target with the vitamin D and magnesium recommendation. About 80 % of the general population has magnesium deficiency. The percentage for IBD patients is much higher because IBDs (including MC) deplete magnesium and so do many of the medications prescribed to treat IBDs and associated issues. So almost everyone who has an IBD is likely to be magnesium deficient.
And this is especially important in your case because both glaucoma and osteopenia/osteoporosis are associated with magnesium deficiency. Furthermore, magnesium is very important for treating those issues. Without adequate amounts of vitamin D and magnesium in the body, it doesn't matter how much calcium you take in because your body will be unable to convert it into new, healthy bone tissue. Vitamin D and magnesium are essential for building healthy bones.
Likewise, magnesium is important for preventing or treating glaucoma, as noted in the abstract quoted here from the research article at the following link.
The Role of Magnesium in the Pathogenesis and Treatment of GlaucomaAbstract
Glaucoma is characterized by chronic optic neuropathy resulting in progressive vision loss. Not only is glaucoma considered as a condition of elevated intraocular pressure (IOP), but also other risk factors may play a role in the pathogenesis of glaucomatous optic nerve damage. Vascular dysregulation in ocular blood flow and oxidative stress are currently suggested as important risk factors for glaucomatous retinal ganglion cell loss. New treatment modalities that improve ocular blood flow and reduce oxidative stress have been investigated in many studies. Magnesium (Mg) is thought to be one of the molecules that has a treatment potential in glaucoma. Mg has been shown to improve blood flow by modifying endothelial function via endothelin-1 (ET-1) and endothelial nitric oxide (NO) pathways. Mg also exhibits neuroprotective role by blocking N-methyl-D-aspartate (NMDA) receptor-related calcium influx and by inhibiting the release of glutamate, and hence protects the cell against oxidative stress and apoptosis. Both improvement in ocular blood flow and prevention of ganglion cell loss would make magnesium a good candidate for glaucoma management. Further studies on the effect of Mg may open a new therapeutic era in glaucoma.
I hope that some of this is 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.