New and Entocort Question
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New and Entocort Question
I am newly diagnosed with microscopic colitis and I was diagnosed with Celiac about five years ago. I am 29 years old and I think I have been living with this for about two years now. I am so grateful to finally know why I have been feeling like this. Most of my drs thought that I must be cheating on my gluten free diet and did not believe me until a follow up biopsy proved otherwise. Next they thought I just had IBS. That did not seem right to me. About two months ago I had a very bad asthma attack that had to be treated with prednisone. That week my stomach felt better than it had in ages. This prompted my dr to do a colonoscopy. I was put on entocort two days ago. So far I have not notice an extreme improvement as I did with the prednisone. I am wondering how long it takes to get better. Also are side effects noticed right away or do they happen over time? My dr wants me to take this for 2 months. Thanks!
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Jess and welcome to the group and of course Merry Christmas
I was dx'd with MC last April and was started on Entocort at that time. For me it took about 3 weeks to see the full benefits, but I did start to see a small improvement after about 2 weeks. It seems that most here take about the same amount of time, although a few report a benefit after about a week
--Joe
I was dx'd with MC last April and was started on Entocort at that time. For me it took about 3 weeks to see the full benefits, but I did start to see a small improvement after about 2 weeks. It seems that most here take about the same amount of time, although a few report a benefit after about a week
--Joe
Joe
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Jess to our internet family! It's pretty quiet today because of Christmas, but there are lots of people here who are on Entocort, or have used it in the past, or have gone on and off it as needed. No doubt you will hear from them in the next few days. In the meantime, I would suggest that you read on the site as you have time. I, too, am new to this diagnosis, and I have gained years of knowledge from the people on this board.
Again, welcome, and Merry Christmas!!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Hi Jess,
Welcome to our online family. We have quite a few members who have both celiac disease and MC. In fact, research suggests that anyone with CD who is refractive to treatment with the GF diet, should be tested for MC, because the correlation is rather high.
Entocort is usually as effective as prednisone, but it takes a little longer to take effect, because with prednisone, a treatment regimen typically begins with a large dose, which is then tapered and soon discontinued, whereas with Entocort, the dosage is constant for the treatment, and then tapered at the very end. Responses vary by the individual, of course, but typically, in most cases, it takes about a week or two for improvement to be noted. In some cases, however, if no improvement is noted after 6 weeks or so, it may be necessary to remove other foods from the diet, because while Entocort helps to control the inflammation, it cannot prevent it from being generated, so some people with more severe food sensitivities cannot get relief from Entocort alone. Most of us who are gluten sensitive, are also sensitive to casein, (the primary protein in all dairy products), and about half of us are sensitive to soy, and all it's derivatives, including other legumes. Some of us have additional food sensitivities as well, such as eggs, yeast, corn, etc.
Believe it or not, for those of us with small intestinal involvement, who are sensitive to those foods, casein, soy, and corn can cause the same type and degree of villus atrophy as gluten. Many of us have found that after we eliminate all of our food sensitivities from our diet, other autoimmune issues, (such as asthma), tend to either improve noticeably, or disappear altogether.
Usually, any serious side effects from Entocort will show up within a few days of use. The most significant side effects that members have noticed are usually neurological, such as dizziness, balance issues, vision problems, etc, and those usually show up rather quickly, (if they are going to develop). The risk of the Draconian side effects usually attributed to other corticosteroids, is usually rather low with Entocort, due to the fact that it does not become activated until it reaches the ileum or the colon, so only about 10 to 15% of it is absorbed into the bloodstream.
Again, welcome aboard, and please feel to ask anything. And Merry Christmas.
Tex (Wayne)
Welcome to our online family. We have quite a few members who have both celiac disease and MC. In fact, research suggests that anyone with CD who is refractive to treatment with the GF diet, should be tested for MC, because the correlation is rather high.
Entocort is usually as effective as prednisone, but it takes a little longer to take effect, because with prednisone, a treatment regimen typically begins with a large dose, which is then tapered and soon discontinued, whereas with Entocort, the dosage is constant for the treatment, and then tapered at the very end. Responses vary by the individual, of course, but typically, in most cases, it takes about a week or two for improvement to be noted. In some cases, however, if no improvement is noted after 6 weeks or so, it may be necessary to remove other foods from the diet, because while Entocort helps to control the inflammation, it cannot prevent it from being generated, so some people with more severe food sensitivities cannot get relief from Entocort alone. Most of us who are gluten sensitive, are also sensitive to casein, (the primary protein in all dairy products), and about half of us are sensitive to soy, and all it's derivatives, including other legumes. Some of us have additional food sensitivities as well, such as eggs, yeast, corn, etc.
Believe it or not, for those of us with small intestinal involvement, who are sensitive to those foods, casein, soy, and corn can cause the same type and degree of villus atrophy as gluten. Many of us have found that after we eliminate all of our food sensitivities from our diet, other autoimmune issues, (such as asthma), tend to either improve noticeably, or disappear altogether.
Usually, any serious side effects from Entocort will show up within a few days of use. The most significant side effects that members have noticed are usually neurological, such as dizziness, balance issues, vision problems, etc, and those usually show up rather quickly, (if they are going to develop). The risk of the Draconian side effects usually attributed to other corticosteroids, is usually rather low with Entocort, due to the fact that it does not become activated until it reaches the ileum or the colon, so only about 10 to 15% of it is absorbed into the bloodstream.
Again, welcome aboard, and please feel to ask anything. And Merry Christmas.
Tex (Wayne)
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 Jess,
I was on Entocort for four years. I have never heard of anyone going into remission in 2 months. The good news is that after a some months or maybe longer, you can probably get by on one Entocort a day. You still have to quit eating foods that make you sick. The side effects vary for everyone, but it made me very nervous and caused insomnia, while on 3 pills a day, but does not bother me at all when I transitioned to one pill a day.
Good luck,
karen
I was on Entocort for four years. I have never heard of anyone going into remission in 2 months. The good news is that after a some months or maybe longer, you can probably get by on one Entocort a day. You still have to quit eating foods that make you sick. The side effects vary for everyone, but it made me very nervous and caused insomnia, while on 3 pills a day, but does not bother me at all when I transitioned to one pill a day.
Good luck,
karen
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Jess; Sorry to hear that you have MC but am glad that you found us and that your doctor figured out what you have. We have a few other people on here who also have both Celiac disease and MC.
I have been on Entocort for about 2.5 months and have not felt any side effects from it (other than constipation from the full 9 mg dose within a week of starting it!) Just a note though, to reiterate what Tex said, if you have any other food intolerances ( besides wheat) and continue eating that food, it will make it difficult for the Entocort to bring you relief of your symptoms. By the time I started the Entocort I had pretty well figured out that I was (besides gluten and casein) also intolerant of tapioca, corn, peas, and eggs. It can be a very frustrating journey to try figure out what those foods might be, through trial and error. A good way to start is to begin eating a basic diet of well-cooked meat or chicken , rice and a gentle vegetable like well-cooked carrots, maybe some applesauce and bananas ( as most can tolerate those) and you should see some relief if certain foods are preventing your remission on the Entocort. Then you can slowly start adding back in other foods, one at a time, until you get a reaction. A faster way that some people have used is a type of testing called MRT to figure out their intolerances, and others a stool test with a lab called Enterolab which can test for soy, gluten, casein, eggs and yeast.
Wishing you a speedy remission,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Jess,
I started Entocort last week after suffering for a month with the worst flare I have ever had. I lost 13 lbs. in a month, could not eat anything and was very, very nauseous.
Within a couple days of starting Entocort I started to feel better. It has been 8 days now and I feel a little better every day. I am taking 3 pills a day for now, my Dr. said we will taper to 2 in a month, and then to 1.
I hope you start to feel better soon and I am sorry you have to join the rest of us in this disease. You will find lots of great info. and friends on this forum though.
I started Entocort last week after suffering for a month with the worst flare I have ever had. I lost 13 lbs. in a month, could not eat anything and was very, very nauseous.
Within a couple days of starting Entocort I started to feel better. It has been 8 days now and I feel a little better every day. I am taking 3 pills a day for now, my Dr. said we will taper to 2 in a month, and then to 1.
I hope you start to feel better soon and I am sorry you have to join the rest of us in this disease. You will find lots of great info. and friends on this forum though.