I've been tapering off entocort very slowly. Am now down to 3 days @ 3mg. and 1 day off then repeating the
cycle. Been doing this for about 6 weeks and being very careful to only eat the safe foods per Enterolabs
and doing pretty good.
The last 3 weeks not so good. Norman not visiting very often. Do I need to just continue this cycle
and see if Norman will return, or increase my entocort for a while, or something else?
Thought things were going good but I guess not.
Any input would be appreciated.
Christina
At a loss what to do
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christinakay
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- Posts: 68
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Hi Christina,
If I were in that situation, I would carefully analyze my diet and then reanalyze it again, searching for traces of my food sensitivities that might be sneaking into my diet and frustrating my recovery. For example, is there any wheat flour in your house? If there is, preventing cross-contamination of your own food will be almost impossible. In addition to that, I would be looking for some other food or supplement in my diet that might be causing the problem.
If I couldn't locate a likely suspect, then I would probably increase the dosage of Entocort, to buy some time so that I could study the situation further, because if the generation of inflammation is allowed to continue, eventually a full flare might develop.
Tex
If I were in that situation, I would carefully analyze my diet and then reanalyze it again, searching for traces of my food sensitivities that might be sneaking into my diet and frustrating my recovery. For example, is there any wheat flour in your house? If there is, preventing cross-contamination of your own food will be almost impossible. In addition to that, I would be looking for some other food or supplement in my diet that might be causing the problem.
If I couldn't locate a likely suspect, then I would probably increase the dosage of Entocort, to buy some time so that I could study the situation further, because if the generation of inflammation is allowed to continue, eventually a full flare might develop.
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.
Hi Christina, Sorry you are having difficulty. I too recently reduced to 3 mg of Entocort but I am using it daily. My balance is a bit touchy with a grinding belly, a bit of foamy GERD, and I've had D a couple of times. I have cut back on fruits and veggies during this transition and I think that helps.
Tex suggested that you look for more hidden "offenders". I've been on a search and I've found some in my diet. I didn't think about reading my vitamin bottles....oops. I also find that I'm so excited to find foods without gluten, dairy, soy, or nuts that I don't read the rest of the ingredients carefully. I found some nice coconut margerine that is free of my four offenders.....except I passed over the word ghee on the label...oops. It might pay off to go back to label reading just in case
Tex suggested that you look for more hidden "offenders". I've been on a search and I've found some in my diet. I didn't think about reading my vitamin bottles....oops. I also find that I'm so excited to find foods without gluten, dairy, soy, or nuts that I don't read the rest of the ingredients carefully. I found some nice coconut margerine that is free of my four offenders.....except I passed over the word ghee on the label...oops. It might pay off to go back to label reading just in case
Have you tried eliminating legumes and nightshades? I try to avoid them but really like them- they add variety, however, I've found once in a while works but too much in one day or too many in consecutive days can make the gurgles return. 
never a good feeling. Same for too many fruits....
never a good feeling. Same for too many fruits....Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Oh, forgot to mention since you may not be familiar with me.... I've been tapering for over a year. Recently, I made it 23 days off then had a sudden increase in D. I've never experienced C on entocort but at this point I wouldn't want to increase the dose again to find out how long it may take. This is in my case and may not be he best plan but I can have almost Normans at 2x day so I'm focused on stress and histamines right now. Don't give up on finding what you're comfortable with in your progress - it just takes longer than we'd like in some cases.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Christina, there could be a real possibility that the Entocort masked a food sensitivity but now that you are reducing the meds the symptoms are more obvious. That happened to me with eggs. It wasn't until I was almost completely off of Entocort that I had some egg drop soup and there was no doubt 4 hours later with the gurgling and some nausea that eggs were going to have to go. I strongly recommend a food diary (although I didn't need one to know that eggs were my problem) and suggest that you test your questionable food for three days while holding the rest of your diet to known safe foods. You'll know once you test them.
take care,
Carol
take care,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Christina,
I've been down the road you are on many times. It's been my experience that it takes up to 8 weeks for the new reduction in Entocort dosage to produce MC symptoms. That tells me that it has a fairly long residual effect, which is why it's so important to reduce the dosage very slowly. You seem to be doing that - good job!
What you are experiencing is very normal and is how Entocort should be used, IMO. You've reached the dosage where you are experiencing some decline and need to reexamine your diet. Most of us have had to eliminate additional foods after the "honeymoon period" of remission with Entocort.
If you haven't begun a food/symptom diary, this would be a good time to start one. It helps immensely when you're trying to see a correlation between problems and the food you're eating. You should also rotate the foods you're eating, if possible, to put some time between the ingestion of each different food. That will help pinpoint problems and eliminate guessing.
Gloria
I've been down the road you are on many times. It's been my experience that it takes up to 8 weeks for the new reduction in Entocort dosage to produce MC symptoms. That tells me that it has a fairly long residual effect, which is why it's so important to reduce the dosage very slowly. You seem to be doing that - good job!
What you are experiencing is very normal and is how Entocort should be used, IMO. You've reached the dosage where you are experiencing some decline and need to reexamine your diet. Most of us have had to eliminate additional foods after the "honeymoon period" of remission with Entocort.
If you haven't begun a food/symptom diary, this would be a good time to start one. It helps immensely when you're trying to see a correlation between problems and the food you're eating. You should also rotate the foods you're eating, if possible, to put some time between the ingestion of each different food. That will help pinpoint problems and eliminate guessing.
Gloria
You never know what you can do until you have to do it.
I agree with everyone else. Something you are eating is still getting you. When I was down to 3mg. a day I realized that peanut butter was no good. I also found that anything fried in canola oil gave me a reaction. The higher doses of Entocort just hides your intolerances, so if you go back up in dose, you may not be able to figure out what is bothering you. Have you taken out all fiber? Nightshades? Sugar? These are just some of the things that could give us problems.
Good luck
Leah
Good luck
Leah