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endocort
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endocort
me again, I feel a little guilty posting questions so often so hope I am not being irritating. Not to speak too soon but I seem to be doing very well since I cut out gluten, I have one fairly Norman in the morning, perhaps transit time is a bit slow as I think there is mild constipation then another Norman after lunch, I have very little wind which is now always" a happy dry fart" I have a bit of bloating and a small amount of gripy pains on the left side low down which I think is my diverticulosis grumbling a bit at the slow transit Normans, my question is, I am on 9mg endocort, have been on that for a few months now, and I feel I could reduce the dose to 6mg a day but my husband thinks that as I am miles better I should stay on it at 9mg, my side effects are minor, a little bruising and a little weight gain but I feel its time to reduce a bit what do you think? thanks for the advise on everything else, I KNOW I wouldnt be where I am without your knowledge, Oh yes one other question, my doc. says eating more fibre would help the diverticulosis but I know fibre is not great with MC so how do I manage that? thanks again Beni
Hi Beni,
That's a tough question, because most doctors try to wean MC patients off Entocort way too soon, even though the patients feel that they need to continue on the full dose for much longer. Most members here find it beneficial to continue with the full dose for at least several months after reaching remission, because if they reduce the dose to quickly, they will almost always relapse.
However, some people are more sensitive than others, to budesonide, (the active ingredient in Entocort). We have a few members who simply cannot take Entocort without having constipation, or other problems, (usually neurological). We even have a couple of members who cannot take more than 3mg per day, without having adverse symptoms.
So, if you feel that constipation is beginning to be a problem, it's possible that it might be time to reduce the dosage, because there is no point in taking more drugs than we need, (and that's generally true of all drugs). Logic tells us, for example, that a patient who weighs 150 kilograms shouldn't need the same dose as a patient who weighs 50 kgs., and yet the label shows the same dose for everyone.
Obviously, there's a wide range of conditions over which the drug can be used, so there is certainly some leeway for fine-tuning the drug to our personal needs.
If reducing the dosage to 6mg per day causes a loss of control, though, you will need to resume taking 9mg per day, immediately, because the symptoms will almost surely become progressively worse, and a full dose is usually required to reinstate remission.
Diverticulitis certainly complicates the issue. After you've been in remission for a while, you should be able to handle some fiber, as long as you don't overdo it, but with MC, it can require a careful balancing act, so do be careful.
Tex
That's a tough question, because most doctors try to wean MC patients off Entocort way too soon, even though the patients feel that they need to continue on the full dose for much longer. Most members here find it beneficial to continue with the full dose for at least several months after reaching remission, because if they reduce the dose to quickly, they will almost always relapse.
However, some people are more sensitive than others, to budesonide, (the active ingredient in Entocort). We have a few members who simply cannot take Entocort without having constipation, or other problems, (usually neurological). We even have a couple of members who cannot take more than 3mg per day, without having adverse symptoms.
So, if you feel that constipation is beginning to be a problem, it's possible that it might be time to reduce the dosage, because there is no point in taking more drugs than we need, (and that's generally true of all drugs). Logic tells us, for example, that a patient who weighs 150 kilograms shouldn't need the same dose as a patient who weighs 50 kgs., and yet the label shows the same dose for everyone.
Obviously, there's a wide range of conditions over which the drug can be used, so there is certainly some leeway for fine-tuning the drug to our personal needs.If reducing the dosage to 6mg per day causes a loss of control, though, you will need to resume taking 9mg per day, immediately, because the symptoms will almost surely become progressively worse, and a full dose is usually required to reinstate remission.
Diverticulitis certainly complicates the issue. After you've been in remission for a while, you should be able to handle some fiber, as long as you don't overdo it, but with MC, it can require a careful balancing act, so do be careful.
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 Beni,
I'm definitely a newbie as I have less posts than you. I'm presently on entocourt. I was prescribed the 4 weeks on 3 pills, 4 weeks on 2 pills and 4 weeks on one. Unfortunately I had extreme neurological (dizziness) side effects so I've had to push through quicker. Generally when I've had constipation for 3 consecutive days I've moved on to the next level. I was on 3 pills for 3 weeks. Moved down to 2 pills. Had exteme dizziness spikes on 2 pills. Tried to move down to 1 pill after only 1 week on 2 pills. Went back wards in terms of results so went back to two pills. Total I was on two pills for two weeks. Started getting constipation after that I moved down to 1 pill. I've presently been on 1 pill for about 10 days. Finally I have very minor side effects at the 3 mg level. I'm starting to have constipation on 1 pill so will try to stay on 1 pill till the end of this week which will put me on 1 pill around 2 weeks. At that point I'm going to try a pill every other day for at least 6-8 weeks and every third day for for at least another month. I've had to push thru faster due to the extreme dizziness I was getting at the 3 and 2 pill level.
If you "step down" too quickly you will know it in your bowel movements if you have to go back to the prior level. That being said....if I hadn't had the extreme dizziness I would have stuck it out to 4 weeks on the first two levels. Hope this helps. Basically I've been listening to my body and the GI nurse said if I was getting constipation I could move down to the next level.
Good luck in your journey! Brandy
I'm definitely a newbie as I have less posts than you. I'm presently on entocourt. I was prescribed the 4 weeks on 3 pills, 4 weeks on 2 pills and 4 weeks on one. Unfortunately I had extreme neurological (dizziness) side effects so I've had to push through quicker. Generally when I've had constipation for 3 consecutive days I've moved on to the next level. I was on 3 pills for 3 weeks. Moved down to 2 pills. Had exteme dizziness spikes on 2 pills. Tried to move down to 1 pill after only 1 week on 2 pills. Went back wards in terms of results so went back to two pills. Total I was on two pills for two weeks. Started getting constipation after that I moved down to 1 pill. I've presently been on 1 pill for about 10 days. Finally I have very minor side effects at the 3 mg level. I'm starting to have constipation on 1 pill so will try to stay on 1 pill till the end of this week which will put me on 1 pill around 2 weeks. At that point I'm going to try a pill every other day for at least 6-8 weeks and every third day for for at least another month. I've had to push thru faster due to the extreme dizziness I was getting at the 3 and 2 pill level.
If you "step down" too quickly you will know it in your bowel movements if you have to go back to the prior level. That being said....if I hadn't had the extreme dizziness I would have stuck it out to 4 weeks on the first two levels. Hope this helps. Basically I've been listening to my body and the GI nurse said if I was getting constipation I could move down to the next level.
Good luck in your journey! Brandy
Hi Beni,
I am a newby too! I thought I had MC under control with my gluten free, soy free, lactose free and sugar free diet! But last week It came back with a vengeance and thank god for this forum!!!! I thought I was going nuts! Anyway I went to my GI and I too have diverticulitis, ulcerated colitis and MC! So to figure out what to eat is not as bad as you think. We do need fiber for the diverticulitis and I get mine from red or new potatoes boiled or I use almond/coconut flour to bake with. I make a lot of smoothies using fruits like cherry, blueberries, mango they come in bags in the frozen section in the supermarket. Stay away from fruits with little seeds like strawberries and blackberries (I found out the hard way, felt like glass going through my descending colon...OUCH)! I also eat lots of chestnuts boiled. There are ways to get fiber with out hurting the MC.
Good Luck....I can really sympathize with you but I am in the same boat!
Best of health,
Robin
I am a newby too! I thought I had MC under control with my gluten free, soy free, lactose free and sugar free diet! But last week It came back with a vengeance and thank god for this forum!!!! I thought I was going nuts! Anyway I went to my GI and I too have diverticulitis, ulcerated colitis and MC! So to figure out what to eat is not as bad as you think. We do need fiber for the diverticulitis and I get mine from red or new potatoes boiled or I use almond/coconut flour to bake with. I make a lot of smoothies using fruits like cherry, blueberries, mango they come in bags in the frozen section in the supermarket. Stay away from fruits with little seeds like strawberries and blackberries (I found out the hard way, felt like glass going through my descending colon...OUCH)! I also eat lots of chestnuts boiled. There are ways to get fiber with out hurting the MC.
Good Luck....I can really sympathize with you but I am in the same boat!
Best of health,
Robin
Robin,
That's some great advice for those of us who have both MC and diverticulitis to deal with. Thanks for the insight.
Tex
That's some great advice for those of us who have both MC and diverticulitis to deal with. Thanks for the insight.
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.
thanks for replys
grateful for your advice, think I may try to get more fibre in before reducing the dose and also try fruit again, that used to make my MC so much worse but I think its time to reintroduce some things but stay on endocrt at 9mg, thanks again Beni
Hi Beni,
Yours is a rather Frequent Question – so do NOT despair. As you are now seeing the beginning of better control of your gut – that’s the greatest news you could have. And yes, sometimes some increasing ‘gassy-ness’ seems to accompany Entocort, especially at higher dose levels. I used to use a little OTC Simethicon product for that issue.
How a person weans down on their Entocort dosage, is quite unfortunately a VERY INDIVIDUAL journey – there simply is no “recipe of rules” that applies to everyone. Further, every GI Doc that gives their own pat instructions to a patient for weaning down their Entocort dosage, seems to have a different scheme anyway.
So I will simply relate to you what the GI I happen to see advised/suggested:
I was advised: When you get to point that things are working quite “normally”, continue on for 10 days to 2 weeks at that same level – then -- if things stay pretty consistent TRY backing down to the next level. Watch and wait. You will be the best judge of your own progress. Beni, in your case this looks like you would now be going from 9mg per day, to 6mg per day. But, give yourself a chance to stabilize some first.
See how this works, and then continue thinking about taking the next step down in similar fashion. Don’t be over anxious, but be prepared to make the change when/if things remain good for a 2-3 week duration. Reducing your Entocort dose may be accomplished fairly quickly, or not so quickly, there is no predicting that for an individual. What you have learned about managing your diet will continue to be important. And if you have divertic’s – it is of course important that you avoid those no-no foods also. A smooth bulk product may be helpful in this situation. Might ask your Doc for opinion.
Quite frequently while on Entocort, the old gut does a kind of a switcha-roo
from D to -- C. Don’t be surprised by this. My personal solution to this is a small daily amount of Kefir. But that might not be a good or correct approach for you. You’ll have to give some thought to what might assist you if/when this happens. Whatever bulk approach recommended for the Diverticultis should help here also.
Up until now you have been only concerned with getting D under control. When things settle down, managing MC can get to be a little more of a “Chess Game”. You will get it figured out. Try hard to stay calm … and confident.
Frustration and anxiety are your enemy when you have one of these Inflammatory Bowel Diseases.
Best wishes for continued improvement.
Gayle
Yours is a rather Frequent Question – so do NOT despair. As you are now seeing the beginning of better control of your gut – that’s the greatest news you could have. And yes, sometimes some increasing ‘gassy-ness’ seems to accompany Entocort, especially at higher dose levels. I used to use a little OTC Simethicon product for that issue.
How a person weans down on their Entocort dosage, is quite unfortunately a VERY INDIVIDUAL journey – there simply is no “recipe of rules” that applies to everyone. Further, every GI Doc that gives their own pat instructions to a patient for weaning down their Entocort dosage, seems to have a different scheme anyway.
So I will simply relate to you what the GI I happen to see advised/suggested:
I was advised: When you get to point that things are working quite “normally”, continue on for 10 days to 2 weeks at that same level – then -- if things stay pretty consistent TRY backing down to the next level. Watch and wait. You will be the best judge of your own progress. Beni, in your case this looks like you would now be going from 9mg per day, to 6mg per day. But, give yourself a chance to stabilize some first.
See how this works, and then continue thinking about taking the next step down in similar fashion. Don’t be over anxious, but be prepared to make the change when/if things remain good for a 2-3 week duration. Reducing your Entocort dose may be accomplished fairly quickly, or not so quickly, there is no predicting that for an individual. What you have learned about managing your diet will continue to be important. And if you have divertic’s – it is of course important that you avoid those no-no foods also. A smooth bulk product may be helpful in this situation. Might ask your Doc for opinion.
Quite frequently while on Entocort, the old gut does a kind of a switcha-roo
from D to -- C. Don’t be surprised by this. My personal solution to this is a small daily amount of Kefir. But that might not be a good or correct approach for you. You’ll have to give some thought to what might assist you if/when this happens. Whatever bulk approach recommended for the Diverticultis should help here also.Up until now you have been only concerned with getting D under control. When things settle down, managing MC can get to be a little more of a “Chess Game”. You will get it figured out. Try hard to stay calm … and confident.
Frustration and anxiety are your enemy when you have one of these Inflammatory Bowel Diseases. Best wishes for continued improvement.
Gayle
Gayle has given good advice. My only additional suggestion is that it's not necessary to drop one pill every day. You can drop to 2 pills for one day, 3 pills for the next two (or one), whatever your symptoms tell you. Once you've been on 2 pills a day for a while, try dropping 1 more pill every other day. This gives you more time to gauge if you're ready for the next level.
Many people who go off Entocort quickly suddenly find that they are back to square one and they don't have a clue what went wrong. If you taper slowly, you're usually able to also determine which foods are giving you problems and drop them along the way.
I have a saying: "Never underestimate the power of Entocort." It's very natural to feel that your improvements are coming solely from your diet, and they surely are affected by diet, but Entocort is playing a powerful role in keeping your symptoms at bay. Hopefully you can taper without any recurrance in your symptoms and will be able to make the transition to being off of it without any problems.
Gloria
Many people who go off Entocort quickly suddenly find that they are back to square one and they don't have a clue what went wrong. If you taper slowly, you're usually able to also determine which foods are giving you problems and drop them along the way.
I have a saying: "Never underestimate the power of Entocort." It's very natural to feel that your improvements are coming solely from your diet, and they surely are affected by diet, but Entocort is playing a powerful role in keeping your symptoms at bay. Hopefully you can taper without any recurrance in your symptoms and will be able to make the transition to being off of it without any problems.
Gloria
You never know what you can do until you have to do it.
Hi Beni....Just remember when introducing fruit and vegetables back in to your diet you have to take it slow. When I started fruit again I would grate it first like apples and pears (even though we chew are food it is not enough to make for easy digestion). When I have tried to go back to raw vegetables I would chop everything very small ( I still have problems with raw veggies so I stay away from them). Start small end big! I hope this help you and be careful.
Best of health,
Robin
Best of health,
Robin