maintanance dose ?
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maintanance dose ?
Hi, I have been doing really well for months, norman, norman ,norman so after 9 months at 9mg endocort I started to reduce VERY VERY slowly till I was down to 3mg, all fine, 6 weeks at that level then one every other day but after that the D. returned with all the cramping, back pain etc so do you think I should stick to a dose of 3mg forever? At the moment I am taking 6mg but think I should step it up to 9 again but am reluctant, I am just managing on 6, but not as good as I was, any advise please? Beni
Hi Beni-I can share with you my experience. I started taking 9mg in Feb. tapered down to 3mg. and completely stopped taking it for 9 days and then my WD came back with a vengeance. I tried 3mg. for a few days, then 6 but went back to 9mg. for a few days and that seemed to "shock my system" and worked. I have been able to taper back down and am currently taking 1-3mg. pill every 3-4 days with success. IMO, I would up the dose, get back to norman and then decrease from there. Good luck to you!
Hi Beni,
Sorry to hear that you had a relapse. That seems to be a common problem as an Entocort treatment program is discontinued.
I agree with Cathy that the way she went about it seems to work well in most cases. Regarding the future, IMO, unless you can discover whatever else is causing you to react, you may need to continue to take a maintenance dose of Entocort in order to remain in remission. You might be able to taper the dose down to 3mg every other day, or every third day. Quite a few members have been able to do that, but beyond that level, one's diet has to be totally free of allergens in order to stop taking Entocort completely. Let your body be your guide.
Tex
Sorry to hear that you had a relapse. That seems to be a common problem as an Entocort treatment program is discontinued.
I agree with Cathy that the way she went about it seems to work well in most cases. Regarding the future, IMO, unless you can discover whatever else is causing you to react, you may need to continue to take a maintenance dose of Entocort in order to remain in remission. You might be able to taper the dose down to 3mg every other day, or every third day. Quite a few members have been able to do that, but beyond that level, one's diet has to be totally free of allergens in order to stop taking Entocort completely. Let your body be your guide.
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.
maintance dose
thanks for the replies, I had got it down to one 3mg pill every other day, thats when all went wrong so I guess there is still something I am reacting to, really fed up today as I had an accident after lunch when working in the garden, God I hate this disease,we own a horticultural farm and we are flat out for the next 4 months so I so dont need this explosive, embarrasing urgency, going to go back on to 9mg till things improve, my GI told me to get on to her if it came back but I dont see the point as it would involve going to the city wasting a day to be told to go back on endocort, since I have tried all else and everything makes it worse, not a good day but have been here before, my real dissapointment is in not being able to at least have a few months break from these drugs. Heaven only knows what I can be reacting to, I feel such a phoney producing food for the nation and not being able to eat it, Beni
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Joefnh
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Beni for the moment given your situation, maintaining the lower dose should be ok, but as mentioned figuring out what food is still aggravating you is important. I can understand keeping things under control during a stressful busy time. I hope you figure out any last problem foods soon, it really does make all of the difference in how you feel day to day.
Joe
That's no worse than me -- one of the crops I grow is wheat.Beni wrote:I feel such a phoney producing food for the nation and not being able to eat it,
I hope you'll be able to restore control quickly.
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,
Taking Entocort, and trying to reduce it, or get off of it is like being on a roller coaster. Like Cathy, I tried to stop it when I was doing well, and seemed to be OK for about 10 days. Then it was back to square one. Right now I am on one 3 mg tablet a day. I have been GF, DF, SF for two months. Based on my food diary, I am thinking that NOT enough healing has taken place for me to tolerate certain vegetables that should be OK. This past week I made a wonderful cauliflower cheese casserole. I had been having a serving each day, and as the week went on, symptoms got worse. I'll be avoiding cauliflower for a long time. So it took me a whole week to figure out that I should eliminate one food.
I can see that it is going to be a VERY LONG PROCESS for each one of us to figure out what is safe to eat. I am just at the beginning of that very long road.
I really wish that I could be off of the Entocort, as it is effecting my vision. I have a small cataract that must be flourishing. My doctor still wants me to stay on the medication, and deal with the cataract later. She is suggesting at least another 6 months on it.
Best of luck on your journey to figure out what works for you. We will be cheering you on.
Marion
Taking Entocort, and trying to reduce it, or get off of it is like being on a roller coaster. Like Cathy, I tried to stop it when I was doing well, and seemed to be OK for about 10 days. Then it was back to square one. Right now I am on one 3 mg tablet a day. I have been GF, DF, SF for two months. Based on my food diary, I am thinking that NOT enough healing has taken place for me to tolerate certain vegetables that should be OK. This past week I made a wonderful cauliflower cheese casserole. I had been having a serving each day, and as the week went on, symptoms got worse. I'll be avoiding cauliflower for a long time. So it took me a whole week to figure out that I should eliminate one food.
I can see that it is going to be a VERY LONG PROCESS for each one of us to figure out what is safe to eat. I am just at the beginning of that very long road.
I really wish that I could be off of the Entocort, as it is effecting my vision. I have a small cataract that must be flourishing. My doctor still wants me to stay on the medication, and deal with the cataract later. She is suggesting at least another 6 months on it.
Best of luck on your journey to figure out what works for you. We will be cheering you on.
Marion
The recipe was from an SCD cookbook. It had onion, garlic, thyme, basil, salt, butter, cauliflower, cheddar cheese, homemade yogurt (fermented 24 hours to use up the lactose), eggs, and paprika. I used a cheddar cheese that said lactose free. Somehow the fermentation process uses up the lactose??? I am so new at this, if I am doing something wrong, I want to know. I just want to get better, and have onlly been on the diet for 2 months. I have a lot to learn! Help!
Hi Mim. If you are going dairy free, then you must stay away from all dairy. Lactose is the SUGAR in the dairy, but most of us react to the PROTEIN (casein) that is in it. Butter and yogurt are also dairy. Some of us can take a little butter, but again, if it comes from a cow, just don't eat it. When you are better, try the cauliflower on it's own to see if you react. I put it in my butternut squash soup and am good with it.
Leah
Leah
Hi Leah,
I just keep learning. There is SO......... MUCH TO LEARN! I am trying to keep a positive attitude. I guess I thought that DAIRY FREE was the same as LACTOSE FREE. With all of the abbreviations, I can't say that I have seen LF for LACTOSE FREE. I have often seen DF for DAIRY FREE. So I guess what I am following is just LF. I really want to follow a diet that will help me to heal, and I don't know what that is yet. My lunch box for tomorrow is plain cooked chicken, white rice, and frozen green peas. All of the unknowns make this complicated. I have much to learn!
Thank you,
Marion
I just keep learning. There is SO......... MUCH TO LEARN! I am trying to keep a positive attitude. I guess I thought that DAIRY FREE was the same as LACTOSE FREE. With all of the abbreviations, I can't say that I have seen LF for LACTOSE FREE. I have often seen DF for DAIRY FREE. So I guess what I am following is just LF. I really want to follow a diet that will help me to heal, and I don't know what that is yet. My lunch box for tomorrow is plain cooked chicken, white rice, and frozen green peas. All of the unknowns make this complicated. I have much to learn!
Thank you,
Marion
HI Mim,
Not to further complicate things for you but I believe peas are a legume. If you have any trouble with soy or legumes (peanuts, lentils, beans, etc) peas could potentially be problematic for you. If you start to have discomfort you may want to back off those and see if things improve. Just a thought.
take care,
Carol
Not to further complicate things for you but I believe peas are a legume. If you have any trouble with soy or legumes (peanuts, lentils, beans, etc) peas could potentially be problematic for you. If you start to have discomfort you may want to back off those and see if things improve. Just a thought.
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
Hi Marion,
So much information to learn is right! After I figured out that dairy might be an issue, I continued to use lactose-free milk, thinking that was OK, but no. I was never a big milk drinker anyway, but I now do almond milk on my GF cereal (the only time I use milk). I use non-dairy creamer in my coffee. I use rice milk if I have to, but it's too watery for my taste. Others here use coconut milk and like it, but I won't touch it, as I've had a major aversion to coconut my entire life, and I believe there's a reason why.
If you feel you aren't ready to say goodbye to cheese, there is a non-dairy shredded cheese called Daiya at Whole Foods.
Instead of butter, try Earth Balance. To my surprise, I don't mind it, and I was initially very resistant to butter substitutes. They do have one that's soy-free. It's at Whole Foods and Trader Joe's.
I recently found an almond yogurt called Amande at Whole Foods. I tried it for breakfast-- GF waffle, berries, with the yogurt on top. Not bad! But, if you are still trying to settle your system down, maybe substitute bananas for the berries.
So much about trying to figure this out is just trial and error! My mantra is, keep it simple, and always have "safe" foods on hand so you don't get stuck being hungry or risk eating something you shouldn't.
So much information to learn is right! After I figured out that dairy might be an issue, I continued to use lactose-free milk, thinking that was OK, but no. I was never a big milk drinker anyway, but I now do almond milk on my GF cereal (the only time I use milk). I use non-dairy creamer in my coffee. I use rice milk if I have to, but it's too watery for my taste. Others here use coconut milk and like it, but I won't touch it, as I've had a major aversion to coconut my entire life, and I believe there's a reason why.
If you feel you aren't ready to say goodbye to cheese, there is a non-dairy shredded cheese called Daiya at Whole Foods.
Instead of butter, try Earth Balance. To my surprise, I don't mind it, and I was initially very resistant to butter substitutes. They do have one that's soy-free. It's at Whole Foods and Trader Joe's.
I recently found an almond yogurt called Amande at Whole Foods. I tried it for breakfast-- GF waffle, berries, with the yogurt on top. Not bad! But, if you are still trying to settle your system down, maybe substitute bananas for the berries.
So much about trying to figure this out is just trial and error! My mantra is, keep it simple, and always have "safe" foods on hand so you don't get stuck being hungry or risk eating something you shouldn't.
Suze
Hi Carol,
With only 8 weeks on trying to avoid foods that could cause problems, I really have NO CLUE as to what triggers my flare ups. At first I was just trying to avoid almost everything. I think lactose is something I must avoid. I'm pretty sure on gluten and soy. I tried navy beans (soaking them overnight, rinsing, cooking the next day for 2 hours), but ended up throwing most of them out as I think they were causing problems. It never occurred to me that peas might be in the same family. I will have to pay very close attention to the consequences. I really appreciate your comment, as it will make me take a second look at foods that I "assumed" were safe.
Hi Maestraz,
Is there another name that you prefer?
I switched to black coffee two months ago. That was tough, but now I probably would not ever go back to cream and sugar.
I have never been one to drink milk. In fact, I hate it so much that I don't even use it on cereal (would rather eat the dry cereal as a snack food).
I am still eating lactose free cheddar cheeses, and I use butter and eggs. I don't think they are bothering me. Can't be positive.
Is your almond yogurt lactose free? It sounds good. I love almonds.
Keeping "safe" foods around is a great idea. I just have to figure out what is "safe" for me.
Thank you both for your help. I will keep you posted. So much to learn!
Just wish I had a magic wand to tell me about my food sensitivities.
Marion
With only 8 weeks on trying to avoid foods that could cause problems, I really have NO CLUE as to what triggers my flare ups. At first I was just trying to avoid almost everything. I think lactose is something I must avoid. I'm pretty sure on gluten and soy. I tried navy beans (soaking them overnight, rinsing, cooking the next day for 2 hours), but ended up throwing most of them out as I think they were causing problems. It never occurred to me that peas might be in the same family. I will have to pay very close attention to the consequences. I really appreciate your comment, as it will make me take a second look at foods that I "assumed" were safe.
Hi Maestraz,
Is there another name that you prefer?
I switched to black coffee two months ago. That was tough, but now I probably would not ever go back to cream and sugar.
I have never been one to drink milk. In fact, I hate it so much that I don't even use it on cereal (would rather eat the dry cereal as a snack food).
I am still eating lactose free cheddar cheeses, and I use butter and eggs. I don't think they are bothering me. Can't be positive.
Is your almond yogurt lactose free? It sounds good. I love almonds.
Keeping "safe" foods around is a great idea. I just have to figure out what is "safe" for me.
Thank you both for your help. I will keep you posted. So much to learn!
Just wish I had a magic wand to tell me about my food sensitivities.
Marion