Just started on Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Just started on Entocort
After being diagnosed over 5 years with cc, my gastro doc finally got me started on Entocort. Starting dose is three tabs first week, 2 tabs second week, then one tab third week. I am suppose to call their office during the third week and let them know how I am doing. In reading other posts, this doesn't look as if it is an instant cure as I was hoping. I have totally eliminated all dairy, weaning off all glutens (this is difficult), no nuts, grapes, or fruit with seeds. It is sometimes a daily issue, I can eat something forever, then it seems like I am having a flare from something that has never bothered me before. I am just so tired of this disease consuming my whole life! Now I have am having incredible headaches, it appears it might be a side effect of the Entocort. Has anyone else had headaches from this drug. I am hoping that as I decrease the amount each week that the headaches get better. If I can just get rid of the diarrhea, gas, and bloating, and constant intestinal rumbling, then I guess I will deal with the headaches. After reading other posts, I am also wondering if this is going to be a long term medication? Any thoughts on all of my issues would be great.
BB
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Bonnie
Welcome. you will learn more from Tex, the administrator of this forum and all of the very knowledgable people here than you will from your GI doctor.
i have not heard of anyone here that has been cured of this disease by taking Entocort for only 3 weeks. Although I was able to get my life back using diet alone, many of us here require diet and meds. If you reduce the meds but don't find out what in your diet is causing the flares, all those horrid symptoms will just come back when you go off the meds. Also, most of us that take Entocort wean off of it very slowly.
I don't know about side effects from the meds but I'm sure someone will weigh in on your headaches.
Christine
(gluten, soy, egg and dairy free----and happy to trade the foods for health)
Welcome. you will learn more from Tex, the administrator of this forum and all of the very knowledgable people here than you will from your GI doctor.
i have not heard of anyone here that has been cured of this disease by taking Entocort for only 3 weeks. Although I was able to get my life back using diet alone, many of us here require diet and meds. If you reduce the meds but don't find out what in your diet is causing the flares, all those horrid symptoms will just come back when you go off the meds. Also, most of us that take Entocort wean off of it very slowly.
I don't know about side effects from the meds but I'm sure someone will weigh in on your headaches.
Christine
(gluten, soy, egg and dairy free----and happy to trade the foods for health)
Christine,
I knew about restriciting dairy, gluten and soy from my diet, but, did not know that eggs were also a possible problem. I only eat maybe 1 or 2 eggs a week, will quit them altogether and see what happens. What about Egg Beaters, does anyone else have any issues with Egg Beaters? I've been using coconut milk as a substitute, has anyone had issues with coconut milk? Yee gads, I have all these questions! It is to the point where I am almost afraid to put anything in my mouth for fear of the repercussions!
Bonnie
I knew about restriciting dairy, gluten and soy from my diet, but, did not know that eggs were also a possible problem. I only eat maybe 1 or 2 eggs a week, will quit them altogether and see what happens. What about Egg Beaters, does anyone else have any issues with Egg Beaters? I've been using coconut milk as a substitute, has anyone had issues with coconut milk? Yee gads, I have all these questions! It is to the point where I am almost afraid to put anything in my mouth for fear of the repercussions!
Bonnie
BB
Welcome, Bonnie 
You might as well not take Entocort if you're only going to be on it for three weeks, IMHO. Most of us have had to be on it for at least six months before we even begin to taper the dose. It takes time for the diet to heal the gut.
Egg beaters are made from egg whites. They were originally created to give a lower cholesterol option of eggs for consumers. Switching from eggs to Egg Beaters will still keep egg whites in your diet.
There have been a few people here who have had reactions to Entocort. I believe Brandy had headaches when she took it. Hopefully she will post her experience with it.
I'm impressed that you have already given up so many foods. I hope that you will improve quickly.
Gloria
You might as well not take Entocort if you're only going to be on it for three weeks, IMHO. Most of us have had to be on it for at least six months before we even begin to taper the dose. It takes time for the diet to heal the gut.
Egg beaters are made from egg whites. They were originally created to give a lower cholesterol option of eggs for consumers. Switching from eggs to Egg Beaters will still keep egg whites in your diet.
There have been a few people here who have had reactions to Entocort. I believe Brandy had headaches when she took it. Hopefully she will post her experience with it.
I'm impressed that you have already given up so many foods. I hope that you will improve quickly.
Gloria
You never know what you can do until you have to do it.
My 1st round of Entocort(Budesonide) of 9mg is up this Friday. I am on a 6 week time frame for 9mg and then I go down to 6mg for 6 weeks. I am actually starting to feel the big C the last couple of weeks and an endless apetite seems like. I'm ready to dwindle down to 6mg and see if I see a bit of relief from that big C. Never thought I would say that!!!! I'm nervous about the D reappearing since the day I started Entocort I had 100% turn-a-round and was progressing with a norman once or twice a day and it was perfect. Now I feel bloated and full except can't seem to eat enough. (although I am watching the amounts I eat becasue I don't want to gain any weight back). I would think that only 3 weeks of it would not be long enough either but I'm pretty new to this all. Just letting you know what my schedule was for Entocort.
thanks
thanks
Cathy
Hi Bonnie,
Welcome to the board. I agree with everything that Christine, Cathy, and Gloria wrote. One week of Entocort followed by two weeks of progressively- reduced doses is a sad reflection on your GI doc's obvious lack of knowledge about treating this disease. Apparently, she or he must think that budesonide (the active ingredient in Entocort EC) is just like the other corticosteroids, where you start with a full dose and then quickly taper it (and then promptly suffer a relapse of symptoms).
Budesonide is definitely not a typical corticosteroid — it only becomes activated in the lower third of the small intestine and the colon, so that less than 19% of it is absorbed into the bloodstream. Headaches as a side effect are not common, but unfortunately not everyone can use Entocort because some patients develop temporary neurological symptoms or other side effects while taking the drug.
As Gloria mentioned, you may trade a headache for diarrhea for three weeks, but after that, you will almost surely be back to square one unless you've been following the GF diet for at least several months or more. As she suggested, a three-week treatment is sort of a cruel joke.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to the board. I agree with everything that Christine, Cathy, and Gloria wrote. One week of Entocort followed by two weeks of progressively- reduced doses is a sad reflection on your GI doc's obvious lack of knowledge about treating this disease. Apparently, she or he must think that budesonide (the active ingredient in Entocort EC) is just like the other corticosteroids, where you start with a full dose and then quickly taper it (and then promptly suffer a relapse of symptoms).
Budesonide is definitely not a typical corticosteroid — it only becomes activated in the lower third of the small intestine and the colon, so that less than 19% of it is absorbed into the bloodstream. Headaches as a side effect are not common, but unfortunately not everyone can use Entocort because some patients develop temporary neurological symptoms or other side effects while taking the drug.
As Gloria mentioned, you may trade a headache for diarrhea for three weeks, but after that, you will almost surely be back to square one unless you've been following the GF diet for at least several months or more. As she suggested, a three-week treatment is sort of a cruel joke.
Gluten sensitivity can cause that effect because anti-gliadin (gluten) antibodies have an extremely long half-life (120 days), which means that gluten's effects linger for a very long time. Before I started the diet, I thought that everything else was making me sick.Bonnie wrote:It is sometimes a daily issue, I can eat something forever, then it seems like I am having a flare from something that has never bothered me before.
Again, welcome aboard and please feel free to ask anything.
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.
Dear Bonnie,
Welcome from Hong Kong (well actually I am in Thailand at present, which I am not complaining about!).
Here is a link to one of the many scientific studies on the effectiveness of Entocort.
http://gut.bmj.com/content/52/2/248.full
Note this research is 10 years old. So this is not "new" information to anyone studying this disease. (It uses patients with the CC version of MC, but IMHO LC is effectively the same disease as CC)
Welcome from Hong Kong (well actually I am in Thailand at present, which I am not complaining about!).
Here is a link to one of the many scientific studies on the effectiveness of Entocort.
http://gut.bmj.com/content/52/2/248.full
Note this research is 10 years old. So this is not "new" information to anyone studying this disease. (It uses patients with the CC version of MC, but IMHO LC is effectively the same disease as CC)
Best wishes in your search for remission. With help from the board you will eventually find it. AntSymptoms rapidly return when medication is stopped. In our study, 8/10 patients had relapse of clinical symptoms within eight weeks after withdrawal of budesonide treatment. Most patients may need sustained treatment to remain symptom free and the effect of maintenance treatment with budesonide in patients with collagenous colitis should be studied further.
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
I agree..... if you are going to cut down on the Entocort after only one week, why bother taking it at all? It took me two full weeks to get results from the Entocort and I thought that was fairly quick..... with others it has taken longer. When I started to notice C (about 4 weeks after starting the Entocort) the doc told me to drop down to 2 a day and I will go see him for a follow up in about 8 weeks to discuss the proper dosage for whatever I'm experiencing at that time. I may start skipping the second pill a few times a week very soon because I'm still noticing C (whooda thunk????) but I think anything below 2 pills you're supposed to wean off V E R Y slowly.
I would call the doc and mention that you've been doing some reading and that the time schedule he laid out doesn't seem typical and see if he will amend that.
Regarding headaches? I had a mild one for the first few days of Entocort but I don't know if it were a side affect or coincidence.
Sue
I would call the doc and mention that you've been doing some reading and that the time schedule he laid out doesn't seem typical and see if he will amend that.
Regarding headaches? I had a mild one for the first few days of Entocort but I don't know if it were a side affect or coincidence.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Bonnie
I tolerate anything coconut just fine. I actually like almond milk with any rice or corn checks. organic bacon, homemade sausage, even "safe" hash browns are good for breaukfast. looking at the olive oil bottle i soetimes wonder if we dont drink the stuff.....we use quite a bit in cooking. Once you control your symptoms you can gradually test fruits and veggies that give you trouble now. Trader Joes almond butter is always in the fridge.
Christine
I tolerate anything coconut just fine. I actually like almond milk with any rice or corn checks. organic bacon, homemade sausage, even "safe" hash browns are good for breaukfast. looking at the olive oil bottle i soetimes wonder if we dont drink the stuff.....we use quite a bit in cooking. Once you control your symptoms you can gradually test fruits and veggies that give you trouble now. Trader Joes almond butter is always in the fridge.
Christine
Hi Bonnie,
Saw your other post and saw Gloria's message to me. I also had side effects on Entocort mostly extreme dizziness and mental confusion. As I reduced the dose the side effects lessened.
I was on Entocort for 4.5 months, tried for 6 months at the recommendation of this board but could not deal with the side effects so stopped at that point. I've been off of Entocort since January 15th. There are some long term users on this board due to unknown scientific mysteries, they sure as heck have tried hard enough to get off. Most US doctors prescribe Entocort for a 3 month period. My guy told me 1 month at 3 pills, 1 month at 2 pills and 1 month for 1 pill. SUGGEST WHEN YOU TALK TO YOUR DOC MENTION THAT THE PHARMACIST SAID YOU WEREN'T GIVEN THE TYPICAL DOSAGE. Doctors aren't too keen on internet stuff.
My Mom has celiac disease so I've seen her eat gluten free for 25 years so I knew the diet wasn't that big of a deal. But still...it took me awhile to wrap my mind around things. Since you are having side effects suggest jump on the GF DF regimen asap. Swap out your cereals for GF chex, swap out your bread for Udis (in freezer section of grocery) swap out your pasta for Tinkyada rice pasta. All this you can get at regular grocery. Check out GF crackers at your regular grocery....you might have to get these at a health food store to find one that is soy free.
Good fats for us are coconut oil (all coconut is generally good), extra virgin olive oil and Earth Balance soy free spread, make sure it is soy free in the margarine section of grocery.
I believe Polly has mentioned if you can get coconut milk without guar gum (or xantham gum) it is a better choice. You might have to look around for it. Ideally you have coconut milk that is just coconut milk and water and no additives.
If headaches continue try eliminating beef for a week and stick to seafood, chicken or pork. It took me awhile to figure this out but Tex mentioned it several times and yup I was getting kind of shoulder/neck/headaches from beef.
I found it takes a lot of protein to heal....like 3 servings a day plus overcooked veggies. Try to focus on foods without ingredient lists.
I listened to my body re: the Entocort stepdowns (as my GI doc was pretty useless). When I became constipated for 2-3 days in a row then I would step down to the level. For you this is probably more important due to side effects at the high dose. PLEASE NOTE EVERYONE IS DIFFERENT BUT for me this was something like: 3 weeks--3 pills, 3 weeks--2 pills, 1 month 1 pill, 1 month 1 pill every other day, 1 month pill every 3rd day, pill every 4th day for awhile and I think I finished out at every 5 days for awhile. Note the jump from 2 pills to 1 pill seems to be tough for folks so make sure you are very solid at that step down from 2 to 1. Consider 2 pills, 1 pill 2 pills, 1 pill every other day for awhile. Extremely slow taper at low end is very important.
Regards, Brandy
Saw your other post and saw Gloria's message to me. I also had side effects on Entocort mostly extreme dizziness and mental confusion. As I reduced the dose the side effects lessened.
I was on Entocort for 4.5 months, tried for 6 months at the recommendation of this board but could not deal with the side effects so stopped at that point. I've been off of Entocort since January 15th. There are some long term users on this board due to unknown scientific mysteries, they sure as heck have tried hard enough to get off. Most US doctors prescribe Entocort for a 3 month period. My guy told me 1 month at 3 pills, 1 month at 2 pills and 1 month for 1 pill. SUGGEST WHEN YOU TALK TO YOUR DOC MENTION THAT THE PHARMACIST SAID YOU WEREN'T GIVEN THE TYPICAL DOSAGE. Doctors aren't too keen on internet stuff.
My Mom has celiac disease so I've seen her eat gluten free for 25 years so I knew the diet wasn't that big of a deal. But still...it took me awhile to wrap my mind around things. Since you are having side effects suggest jump on the GF DF regimen asap. Swap out your cereals for GF chex, swap out your bread for Udis (in freezer section of grocery) swap out your pasta for Tinkyada rice pasta. All this you can get at regular grocery. Check out GF crackers at your regular grocery....you might have to get these at a health food store to find one that is soy free.
Good fats for us are coconut oil (all coconut is generally good), extra virgin olive oil and Earth Balance soy free spread, make sure it is soy free in the margarine section of grocery.
I believe Polly has mentioned if you can get coconut milk without guar gum (or xantham gum) it is a better choice. You might have to look around for it. Ideally you have coconut milk that is just coconut milk and water and no additives.
If headaches continue try eliminating beef for a week and stick to seafood, chicken or pork. It took me awhile to figure this out but Tex mentioned it several times and yup I was getting kind of shoulder/neck/headaches from beef.
I found it takes a lot of protein to heal....like 3 servings a day plus overcooked veggies. Try to focus on foods without ingredient lists.
I listened to my body re: the Entocort stepdowns (as my GI doc was pretty useless). When I became constipated for 2-3 days in a row then I would step down to the level. For you this is probably more important due to side effects at the high dose. PLEASE NOTE EVERYONE IS DIFFERENT BUT for me this was something like: 3 weeks--3 pills, 3 weeks--2 pills, 1 month 1 pill, 1 month 1 pill every other day, 1 month pill every 3rd day, pill every 4th day for awhile and I think I finished out at every 5 days for awhile. Note the jump from 2 pills to 1 pill seems to be tough for folks so make sure you are very solid at that step down from 2 to 1. Consider 2 pills, 1 pill 2 pills, 1 pill every other day for awhile. Extremely slow taper at low end is very important.
Regards, Brandy
Hi Everyone,
Today is day six of my taking Entocort. I am not having such terrible headaches any longer, just mild headache and I still feel like my head feels strange. I no longer have the "D", but still having daily bloating and gas. I am totally dairy and gluten free. A few days ago I started having incredible cramping, charlie horses in my feet and calves. I am guessing this is another side effect of the medication or my body adjusting to no dairy and glutens. This is a tough diet. I already do not eat red meat, only eat fish or chicken 3 to 4 times a week. Now I am worried about nutrition. With all the food problems I have had for so long, I'm afraid to eat most things. I love salads, I think I am still able to tolerate them fairly well. With the suggestion on the almond butter, since I cannot eat nuts any longer that is no longer an option. I guess my expectations were set way to high, it took me years to get to this shape, I'm undoubtedly not going to be cured overnight. It is just a day by day situation for me. Grrrr, hate having all of these medical problems.
Thank you so much to everyone for all of your posts. I got some great ideas from all of you. It is nice to know there are other people dealing with the same situation as I am.
Bonnie
Today is day six of my taking Entocort. I am not having such terrible headaches any longer, just mild headache and I still feel like my head feels strange. I no longer have the "D", but still having daily bloating and gas. I am totally dairy and gluten free. A few days ago I started having incredible cramping, charlie horses in my feet and calves. I am guessing this is another side effect of the medication or my body adjusting to no dairy and glutens. This is a tough diet. I already do not eat red meat, only eat fish or chicken 3 to 4 times a week. Now I am worried about nutrition. With all the food problems I have had for so long, I'm afraid to eat most things. I love salads, I think I am still able to tolerate them fairly well. With the suggestion on the almond butter, since I cannot eat nuts any longer that is no longer an option. I guess my expectations were set way to high, it took me years to get to this shape, I'm undoubtedly not going to be cured overnight. It is just a day by day situation for me. Grrrr, hate having all of these medical problems.
Thank you so much to everyone for all of your posts. I got some great ideas from all of you. It is nice to know there are other people dealing with the same situation as I am.
Bonnie
BB
Bonnie,
If you don't eat much meat, you are probably low on magnesium and vitamin B-12. Magnesium deficiency especially, can cause leg or foot cramps, and many of us here take a magnesium supplement in order to prevent the problem. Don't overdo the magnesium, though, because too much can become a laxative. If you don't want to take an oral magnesium supplement, you can absorb it through your skin by either using an oil-based spray, or by soaking in Epsom salts in the bathtub.
I had severe leg and foot cramps before I started taking a magnesium supplement (about 250 mg per day).
Tex
If you don't eat much meat, you are probably low on magnesium and vitamin B-12. Magnesium deficiency especially, can cause leg or foot cramps, and many of us here take a magnesium supplement in order to prevent the problem. Don't overdo the magnesium, though, because too much can become a laxative. If you don't want to take an oral magnesium supplement, you can absorb it through your skin by either using an oil-based spray, or by soaking in Epsom salts in the bathtub.
I had severe leg and foot cramps before I started taking a magnesium supplement (about 250 mg per day).
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.
Thank's Tex for the tip about Magnesium, now it makes sense about the leg/feet cramping. I was on a Mag supplement forever; the GI told me to quit taking it as it may be a source of the "D". Well of course, we all know the source of the "D" is from my CC! So, no mag and then I have the cramping. I was using 400MG daily, I will have to see if I could possibly get it in a smaller dosage.
Bonnie
Bonnie
BB
Started taking only 2 Entocort tabs on Tuesday, feel miserable! Yuck, what is up with the GI doc, it is obviously going to take more than 1 week of 3tabs daily to get any sort of effect. I'm really down, no glutens, dairy, or nuts for better than 2 weeks and still not much relief in symptoms, especially bloating and discomfort. I guess I really must have been expecting a miracle. I think what everyone has said about it taking much longer is oh so true. Now I just need to convince my doc I need to take at least 3 tabs or more a day for a while. I'm just frustrated today!
Bonnie
Bonnie
BB
Hi Bonnie,
It has now been 1 week since I weaned down to 2 entocort(6mg) a day and am feeling still remarkably good.....however....Bonnie you have to know that I took the 3 entocort(9mg) a day for 6 weeks first. I think that doc has you moving on and off this drug way to fast. I also had 8 weeks of pepto treatments and 3 weeks of GF before I started taking entocort. Pretty sure that didn't hurt either although I didn't see much relief from the pepto until I got off gluten. Hang in there it will get better.
It has now been 1 week since I weaned down to 2 entocort(6mg) a day and am feeling still remarkably good.....however....Bonnie you have to know that I took the 3 entocort(9mg) a day for 6 weeks first. I think that doc has you moving on and off this drug way to fast. I also had 8 weeks of pepto treatments and 3 weeks of GF before I started taking entocort. Pretty sure that didn't hurt either although I didn't see much relief from the pepto until I got off gluten. Hang in there it will get better.
Cathy