Hi All. Since we are all different, I thought I would share how Entocort ( Budesonide) worked for me and how I got off of it.
-Diet is key to successfully getting off of Entocort. If you don't take out the foods that are causing the inflammation, then you are most likely to flare as soon as you get off of it.
_most doctors want you to be off of it between 2-4 months. Sometimes this is not long enough.
-I started on 9 mg. a day ( GF,DF, no raw fruits or veggies)). Stayed at this level for about 2 months... or until I started getting slightly constipated.
-went down to 6 mg. per day for another month or so.
-Alternated between 6 and 3 mg, per day for a couple of weeks until I got down to 3mg. a day
-Stayed on this dose for a couple of months ( went SF)
- Went down to every other day for a good month or so
-skipped two days.... then three
- finally stopped taking it ( and started taking a Claritin for histamine reaction)
-It all took six to seven months. Have been able to add back some fruits, beans, and salad.
Entocort . My experience
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Hi Leah,
Thanks for sharing your experience with rolling off Entocort. What you did was very similar to how I rolled off. I am 2 months off Entocort now and so far so good. I'm hesitant to say too much because I don't want to jinx it but if this keeps up I'll have something good to post later. You won't be surprised when I tell you that the two bad days I've had in the last two months were the two times I ate out with friends, as careful as I was with ordering, both times I got sick. It is safer for me to eat meals at home, restaurants are not worth the consequences. It's a more microscopic 'food' world I live in.
Thanks for sharing your experience with rolling off Entocort. What you did was very similar to how I rolled off. I am 2 months off Entocort now and so far so good. I'm hesitant to say too much because I don't want to jinx it but if this keeps up I'll have something good to post later. You won't be surprised when I tell you that the two bad days I've had in the last two months were the two times I ate out with friends, as careful as I was with ordering, both times I got sick. It is safer for me to eat meals at home, restaurants are not worth the consequences. It's a more microscopic 'food' world I live in.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Re: Entocort . My experience
That's so awesome to hear Leah!! I too had hoped to be in the same situation but alas, not so lucky!Continued good luck to you!Leah wrote:Hi All. Since we are all different, I thought I would share how Entocort ( Budesonide) worked for me and how I got off of it.
-Diet is key to successfully getting off of Entocort. If you don't take out the foods that are causing the inflammation, then you are most likely to flare as soon as you get off of it.
_most doctors want you to be off of it between 2-4 months. Sometimes this is not long enough.
-I started on 9 mg. a day ( GF,DF, no raw fruits or veggies)). Stayed at this level for about 2 months... or until I started getting slightly constipated.
-went down to 6 mg. per day for another month or so.
-Alternated between 6 and 3 mg, per day for a couple of weeks until I got down to 3mg. a day
-Stayed on this dose for a couple of months ( went SF)
I'm so glad that you've been able to do this Leah! Thanks for sharing. I had hoped to be in the same situation by now, but alas, not yet for me! Continued good luck to you!
- Went down to every other day for a good month or so
-skipped two days.... then three
- finally stopped taking it ( and started taking a Claritin for histamine reaction)
-It all took six to seven months. Have been able to add back some fruits, beans, and salad.
Leah, thank you! I have been struggling with a decrease in medication and re-occurring symptoms. It is helpful to know that I can take more time in managing budesonide, diet, and returning symptoms. I wonder if returning symptoms can impede continue healing or are they just the result of getting off steroids? On one pill a day, my back hurts, joints stiffen up, morning headaches, ears ring, dizzy with mild intestinal problems. Will these issues dissapate or will they cause further damage to the healing process of a diseased colon? Should I go back to Two pills a day. I have been on budesonide since The last week in Oct., 2016. I am a 72 year old retired school teacher and grandmother. Look forward to hearing back from those of you that know...
Linda
Hello Linda,
Welcome to our Internet family. You mentioned in your other post that you are avoiding gluten and dairy products. Removing those 2 items from our diet will often bring remission, but then a relapse occurs a few weeks or so later. This happens because gluten reactions dominate the immune system, so gluten reactions receive priority. But after we remove gluten from our diet our anti-gluten (anti-gliadin) antibody level begins to slowly decline, and the immune system begins to look for additional antigens that it has been ignoring because of the gluten problem. Most of us are also sensitive to soy, and many are sensitive to eggs. So after an initial period of improvement, we begin to react to any other food sensitivities in our diet. I'm guessing that this is probably your current situation.
If I were in your situation I would cut all soy and legume ingredients and eggs out of my diet. This should bring improvement again. If it doesn't, then you have additional food sensitivities that will have to be addressed. After you have been in remission for a while you can test eggs back into your diet to see if they actually cause you to react. They may not, and in that case you can continue to eat them.
If I didn't see some improvement 2 or 3 days after removing soy and eggs from my diet, I would increase the budesonide again in order to stop the symptoms. This is because the healing does indeed lose ground when our symptoms relapse. The symptoms are markers of increased inflammation. So increasing the budesonide dosage will help to suppress the inflammation so that your gut can resume healing sooner. It's not absolutely essential to increase the dosage, but it takes a while for the gut to heal from the diet changes and stopping the symptoms with budesonide can make life a lot more pleasant during the initial stages of the healing process.
I hope that this addresses your questions.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. You mentioned in your other post that you are avoiding gluten and dairy products. Removing those 2 items from our diet will often bring remission, but then a relapse occurs a few weeks or so later. This happens because gluten reactions dominate the immune system, so gluten reactions receive priority. But after we remove gluten from our diet our anti-gluten (anti-gliadin) antibody level begins to slowly decline, and the immune system begins to look for additional antigens that it has been ignoring because of the gluten problem. Most of us are also sensitive to soy, and many are sensitive to eggs. So after an initial period of improvement, we begin to react to any other food sensitivities in our diet. I'm guessing that this is probably your current situation.
If I were in your situation I would cut all soy and legume ingredients and eggs out of my diet. This should bring improvement again. If it doesn't, then you have additional food sensitivities that will have to be addressed. After you have been in remission for a while you can test eggs back into your diet to see if they actually cause you to react. They may not, and in that case you can continue to eat them.
If I didn't see some improvement 2 or 3 days after removing soy and eggs from my diet, I would increase the budesonide again in order to stop the symptoms. This is because the healing does indeed lose ground when our symptoms relapse. The symptoms are markers of increased inflammation. So increasing the budesonide dosage will help to suppress the inflammation so that your gut can resume healing sooner. It's not absolutely essential to increase the dosage, but it takes a while for the gut to heal from the diet changes and stopping the symptoms with budesonide can make life a lot more pleasant during the initial stages of the healing process.
I hope that this addresses your questions.
Again, welcome aboard, and please feel free to ask anything.
Tex
