Cathy,
I'm sorry, but not surprised, that eliminating Entocort did not result in a lasting remission. I always hope that it will work, but for most of us, Entocort needs to be tapered very slowly over a period of several weeks for each reduction.
Most people don't understand the purpose of Entocort. It is a symptom repressor, not a cure for MC. It's natural to assume we have resolved our symptoms when Normans appear, but in reality, Entocort has done much of the work at first. We use it to live a normal life while we are trying to determine which foods are causing us problems. It should be reduced slowly, watching to see if we're starting to deteriorate. It shouldn't be reduced further until we resolve any deterioration by eliminating more foods,
IMHO, it is best to reduce it by one pill every other day or one pill every two days at first. If, after a few weeks, you continue to have Normans and no deterioration, then it's safe to reduce one pill every day (or every other day if you originally reduced it every two days at first.) Since Entocort stays in your system for a long time - we've found it stays at least two months - you won't immediately notice any change. That's why it's important to stay on a slightly lowered amount for a few weeks. Some here, including myself in the past, have gotten down to taking just one pill every other day, then one pill every two days, etc. to be sure that we are not going to react once we're completely off of it. Even with that slow of a taper, we can still begin having problems.
You should take care of the flare you're having by going back on it as quickly as possible with the dosage that completely resolves your symptoms. Your doctor clearly doesn't understand the role of Entocort or diet in this disease. She will be learning from your experience. It's good that she's willing to extend your prescription. Most of us are treating ourselves according to the knowledge we've gain from our own experience and the experience of others on this board.
Good luck and keep us posted.
Gloria
Entorcort successful.....
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks so much Gloria. I had planned on doing one pill every other day, then every 2 days, etc. but got overly confident once I got past day 4, then day 5, etc. I will definitely be doing things differently next time I try to taper down. I so appreciate the experiences of the people on this board. You are all so helpful and I greatly appreciate it!!!!
Hi Cathy,
Sorry about your bump in the road and I recall when I'd been on Entocort for 2-1/2 month - 3 months it was very seductive and I felt "healed." I forced myself to stay on 4.5 months and probably slightly longer with slow taper would have been better. Yes you can get off meds. I'm barely starting to head into remission now. I've been off of Entocort 4 months.
Brandy
Sorry about your bump in the road and I recall when I'd been on Entocort for 2-1/2 month - 3 months it was very seductive and I felt "healed." I forced myself to stay on 4.5 months and probably slightly longer with slow taper would have been better. Yes you can get off meds. I'm barely starting to head into remission now. I've been off of Entocort 4 months.
Brandy
-
CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Just an update, after 3 days of 9mg. budesonide, I finally had a norman! Planning on decreasing down to 6mg. and will see how that goes and hopefully down to 1 a day soon.
Just an FYI, I found the side effects much worse this time, major face breakouts, irritable, terrible metallic taste in my mouth and I don't recall them being this severe so I am even more motivated to get off this drug!
Just an FYI, I found the side effects much worse this time, major face breakouts, irritable, terrible metallic taste in my mouth and I don't recall them being this severe so I am even more motivated to get off this drug!
Entocort newbie
Hi Folks. I've been reading this site for about 6 weeks now. Glad you're here!! I have been diagnosed with MC last summer.. doc tried Salofalk and seemed to work for a few months then things just got worse again. I've started Entocort about 4 weeks ago.. what a relief to not have to run RUN to the bathroom 20 times a day to expell brown soup.
I read about side effects of entocort online and mine aren't there. I have a wee bit of gas, but dry farts don't bother me at all. Some pain in my lower ab when things are moving out, but tolerable. What i do have are night sweats worse than when I was hot flashing a few years ago, shortened hours of sleep, and the huge leg cramps below the back of the knee.. upper calf muscle. Today.. I had major cramping in my leg.. always the right one. I was taking E at around 3pm.. and gradually brought it down to 9-10am.. seems the sweats are less at night. And now that my body is actually holding on to water/fluids I pee a lot! Could be I'm not used to it from ridding my body of it the other way for so long.
Not sure what my docs plan is yet.. will be seeing her in about 3 weeks. I do want to talk with her about diet, just to see how receptive she is to the idea. I do believe you all and want to share the info.. I am willing to be her study case if she is willing. I hope I'm not wrong in thinking she's open minded to other options. Shall see.. will keep you posted.
I am very happy to read you all, and thank you for being here.
I read about side effects of entocort online and mine aren't there. I have a wee bit of gas, but dry farts don't bother me at all. Some pain in my lower ab when things are moving out, but tolerable. What i do have are night sweats worse than when I was hot flashing a few years ago, shortened hours of sleep, and the huge leg cramps below the back of the knee.. upper calf muscle. Today.. I had major cramping in my leg.. always the right one. I was taking E at around 3pm.. and gradually brought it down to 9-10am.. seems the sweats are less at night. And now that my body is actually holding on to water/fluids I pee a lot! Could be I'm not used to it from ridding my body of it the other way for so long.
Not sure what my docs plan is yet.. will be seeing her in about 3 weeks. I do want to talk with her about diet, just to see how receptive she is to the idea. I do believe you all and want to share the info.. I am willing to be her study case if she is willing. I hope I'm not wrong in thinking she's open minded to other options. Shall see.. will keep you posted.
I am very happy to read you all, and thank you for being here.
I've been living with this disease for about a year. My gastro specialist is trying different drugs to bring it under control.. not doing great so far.
Hi Anne,
Welcome to our internet family. It's good to see that you're doing better with Entocort.
The leg cramps (and possibly the night sweats) could be due to vitamin or mineral deficiencies due to all the D and the malabsorption problem that many of us develop with this disease. Magnesium deficiency is a common cause of leg cramps and restless leg syndrome. A potassium deficiency can also cause it. It's also possible that you might be deficient in one or more of the B vitamins. Dehydration can also cause cramps, but dehydration shouldn't be as much of a problem now as it was previously.
It's also possible for Entocort to cause some of those problems (except I've never heard of it causing leg cramps). Sleep problems are common, and it can cause hormonal issues, since it can affect the adrenals.
Again, welcome aboard, and good luck with your doctor appointment.
Tex (Wayne)
Welcome to our internet family. It's good to see that you're doing better with Entocort.
The leg cramps (and possibly the night sweats) could be due to vitamin or mineral deficiencies due to all the D and the malabsorption problem that many of us develop with this disease. Magnesium deficiency is a common cause of leg cramps and restless leg syndrome. A potassium deficiency can also cause it. It's also possible that you might be deficient in one or more of the B vitamins. Dehydration can also cause cramps, but dehydration shouldn't be as much of a problem now as it was previously.
It's also possible for Entocort to cause some of those problems (except I've never heard of it causing leg cramps). Sleep problems are common, and it can cause hormonal issues, since it can affect the adrenals.
Again, welcome aboard, and good luck with your doctor appointment.
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.
-
Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
I don't know whether Entocort can cause leg cramping or not;I know other steroids including prednisone "suck" the calcium right out of your bones, and other minerals, especially if you are already deficient. I am on a 5-day "burst" of prednisone for my asthma, and the first night I took it I had terrible foot cramps. I was pretty sure I wasn't low on calcium or magnesium, since I'm on a carefully selected supplement that's labeled clearly not to contain gluten, dairy, egg, or soy. So I decided it must be a potassium deficiency, and I started eating two bananas per day - and my cramping is gone.
In your case, I'd recommend you see if you can find supplements for calcium and magnesium. A combination will be most likely to give you the correct balance between the two. Then try bananas or a potassium supplement. Be sure you check the labels carefully - you don't want to accidentally consume gluten, dairy, egg, or soy - or anything else you are sensitive to.
It can't hurt - the cramping is almost certainly related to a mineral deficiency, regardless of whether it's caused by the steroid or not. And it probably will help.
Best wishes,
Deanna
In your case, I'd recommend you see if you can find supplements for calcium and magnesium. A combination will be most likely to give you the correct balance between the two. Then try bananas or a potassium supplement. Be sure you check the labels carefully - you don't want to accidentally consume gluten, dairy, egg, or soy - or anything else you are sensitive to.
It can't hurt - the cramping is almost certainly related to a mineral deficiency, regardless of whether it's caused by the steroid or not. And it probably will help.
Best wishes,
Deanna
-
birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Medical Community
The GI medical community really needs to get up to date on this disease. My GI pat answer when I asked him about food sensitivities was "There is much research going on right now" and they don't seem to be able to open their mind to anything other than what they are taught and protocol. I wonder if it is fear of being sued or what ..... We go to specialists because we feel they must know more and will be able to know the best and latest treatment, but that doesn't appear to be so.
Diagnosed with Collagenous Colitis November 2012.
A big part of it is. As long as they go by the book, they stand a much better chance of prevailing in court, even when the conventional wisdom that "the book" is based on is wrong.birdlover3 wrote:I wonder if it is fear of being sued or what ....
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.
-
birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
-
birdlover3
- Adélie Penguin
- Posts: 202
- Joined: Mon Dec 31, 2012 2:04 pm
- Location: Illinois
Personally I don't think it would matter. Unless the medical association itself accepts the view Tex talks about, they won't wain from their position. My own personal feeling. Fortunately I do have a family doctor that works with me about things like this. He's willing usually to listen to me and try different things.
Diagnosed with Collagenous Colitis November 2012.