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Hi, all! I am on day 3 of Entocort. D only once or twice a day. I think I may be having some issues, though. I have started feeling very shaky and nervous. My hands are actually trembling. Is this normal or is it something I need to bring to my GI's attention? I am also having some muscle spasms. My blood sugar is still doing good.
I tried drinking a cup of coffee this morning...ended up in the bathroom. The shakiness started the first night, so I don't think it's from the caffeine.
Take care!
Denise
Day 3 of Entocort
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Joefnh
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Denise the neurological symptoms you are experiencing are related to the Entocort. I took 9mg a day for 7 months and during the first 4 weeks experienced what you are going through. The symptoms did eventually fade as I stuck it out. Others have had to stop the entocort due the side effects or reduce the dose to a lower tolerable dose. If the symptoms are concerning to you, you should contact your doctor.
Hang in there Denise
Joe
Hang in there Denise
Joe
Joe
Denise,
IMO, if you are actually having tremors from the drug, you should stop taking it immediately. Feeling nervous is one thing, but tremors and muscle spasms are somewhat serious adverse side effects, IMO. I'm not a doctor, but I certainly wouldn't continue to take a drug that caused such symptoms.
As Joe said, reducing the dosage might reduce the symptoms, depending on how sensitive you are to budesonide, but with symptoms that pronounced, most patients are probably much better off if they discontinue the drug, rather than to just reduce the level of the symptoms, by reducing the dosage.
Events such as this almost always seem to happen over the weekend, where the chances of getting in contact with your doctor are slim to none. Regardless of what your doctor might think, though, you are the final judge of whether or not you should continue to take the drug.
I can't remember if you have diabetes or not, but Entocort can definitely cause blood sugar issues, even in people with normal blood sugar levels, so if you have diabetes, and you choose to continue taking the drug, you definitely need some professional guidance. Diabetes can kick the risk of complications up a notch or two. If the situation becomes serious, please don't hesitate to go to the ER, if you feel it might be necessary.
Tex
IMO, if you are actually having tremors from the drug, you should stop taking it immediately. Feeling nervous is one thing, but tremors and muscle spasms are somewhat serious adverse side effects, IMO. I'm not a doctor, but I certainly wouldn't continue to take a drug that caused such symptoms.
As Joe said, reducing the dosage might reduce the symptoms, depending on how sensitive you are to budesonide, but with symptoms that pronounced, most patients are probably much better off if they discontinue the drug, rather than to just reduce the level of the symptoms, by reducing the dosage.
Events such as this almost always seem to happen over the weekend, where the chances of getting in contact with your doctor are slim to none. Regardless of what your doctor might think, though, you are the final judge of whether or not you should continue to take the drug.
I can't remember if you have diabetes or not, but Entocort can definitely cause blood sugar issues, even in people with normal blood sugar levels, so if you have diabetes, and you choose to continue taking the drug, you definitely need some professional guidance. Diabetes can kick the risk of complications up a notch or two. If the situation becomes serious, please don't hesitate to go to the ER, if you feel it might be necessary.
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.
Tex - I am diabetic and on an insulin pump and continuous glucose monitor. The Entocort hasn't affected my blood sugar at all. I am under close supervision with my endocrinologist, who okayed me taking the Entocort. I think I'll take your advice, though, and not take my dose tomorrow morning. I'll call my GI on Monday.
Thanks for your input!
Denise
Thanks for your input!
Denise
Denise,
I apologize for not remembering. Sometimes I can't keep track of who has which issues around here. Doctors have a big advantage, since they have our files in front of them when they meet with us.
Since you have a monitor, then obviously blood sugar changes are not contributing to your tremors, etc., which means that you're just having a somewhat common neurological reaction to the Entocort, as Joe mentioned. As long as your vision is not affected, (blurred vision, or tunnel vision), and you're not having significant balance issues, (vertigo, etc.), and you're not showing any signs of anaphylaxis, it should be safe for you to continue to take it, (as Joe suggested), or to try a lower dosage, if you're inclined to do so, to see if the side effects will diminish. If you feel that the Entocort is helping already, and the side effects are not too bothersome, then continuing to take it, or trying a reduced dosage rate, is your decision. Some people are just more sensitive to budesonide, (the active ingredient in Entocort), than others. In fact, we have a couple of members who have never been able to tolerate more than 3 mg per day, (only 1 capsule), without having significant neurological problems. For them, a single capsule works just as effectively to control their MC symptoms, as 3 capsules per day works for most people. And, a few doctors only prescribe 6 mg per day, as a starting dose.
Sorry for all the confusion - I was afraid that the budesonide was affecting your blood sugar. Obviously, that's not the case.
Tex
I apologize for not remembering. Sometimes I can't keep track of who has which issues around here. Doctors have a big advantage, since they have our files in front of them when they meet with us.
Since you have a monitor, then obviously blood sugar changes are not contributing to your tremors, etc., which means that you're just having a somewhat common neurological reaction to the Entocort, as Joe mentioned. As long as your vision is not affected, (blurred vision, or tunnel vision), and you're not having significant balance issues, (vertigo, etc.), and you're not showing any signs of anaphylaxis, it should be safe for you to continue to take it, (as Joe suggested), or to try a lower dosage, if you're inclined to do so, to see if the side effects will diminish. If you feel that the Entocort is helping already, and the side effects are not too bothersome, then continuing to take it, or trying a reduced dosage rate, is your decision. Some people are just more sensitive to budesonide, (the active ingredient in Entocort), than others. In fact, we have a couple of members who have never been able to tolerate more than 3 mg per day, (only 1 capsule), without having significant neurological problems. For them, a single capsule works just as effectively to control their MC symptoms, as 3 capsules per day works for most people. And, a few doctors only prescribe 6 mg per day, as a starting dose.
Sorry for all the confusion - I was afraid that the budesonide was affecting your blood sugar. Obviously, that's not the case.
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, everyone! I stopped taking the Entocort yesterday. I woke up Sunday with a migraine. I haven't had a migraine in 7 years. I only took 2 pills that morning. Called my GI on Monday and was told to come in. His NP told me that they have never had a patient have tremors or headaches from the Entocort, so she doubted that's what was causing the problem. GI came in and said even though they hadn't seen it, didn't mean it couldn't happen. It drives me crazy when people in the medical field make you feel like you're making things up. GI gave me 3 choices..lower dose of Entocort to 1 pill a day, switch to liada, or take the wait and see route. I decided to take the wait and see route since I've been having Norman since Saturday. So far so good. Still trying my best to eat gluten free. GI said I might just be having a spontaneous remission. Has anyone had this happen after just 4 days of Entocort? I asked him again about Celiac...he said that the blood test I had was very accurate. I'm not sure how he knows that since he wasn't the one who did the test. He also said that I haven't had the significant weight loss that he sees with Celiac. I have always been that person...you know the one in that 1% that will have side effects from drugs or get's pregnant after having your tubes tied ( yes that actually happened...had to have tubal ligation twice). Anyway, now I'm rambling.
I ordered the Enterolab tests yesterday.
I hope everyone is doing well!!
Take care,
Denise
I ordered the Enterolab tests yesterday.
I hope everyone is doing well!!
Take care,
Denise
I was thinking your GI was competent until I saw the above remarks. Celiac bloodwork is notoriously innaccurate and produces many false negatives. Most docs know this. You need lots of gluten damage to get positive blood results. Weight loss is also a bad predictor of celiac disease since many people overcompensate with more food and calories. Silent celiac produces no discernable symptoms at all yet is very common!dgshelton wrote: GI said I might just be having a spontaneous remission. Has anyone had this happen after just 4 days of Entocort? I asked him again about Celiac...he said that the blood test I had was very accurate. He also said that I haven't had the significant weight loss that he sees with Celiac.
Hopefuly your Enterolab results will prove more helpful.
As far as spontaneous remission, you can only prove that after stopping the Entocort (since it masks the symptoms). If the normans continue, then by George, you may be one of the lucky few. But IMHO, your GI is doling out false hope.
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irisheyes13
- Adélie Penguin
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- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Denise,
I second Zizzle's comments regarding your GI. It is well documented that blood testing for celiac disease has a high percentage of false negatives. I believe I've read as high as 30% or so. Many, many people get diagnosed with Celiac and haven't experienced weight loss too. As a matter of fact everyone I have known that got diagnosed wasn't underweight at the time of diagnosis which is only 5 people but is not a prerequisite for dx.
Lower doses of Entocort have been successful in stopping the D but having some of the unwanted nuisance side effects subside too. I understand why you would choose to discontinue however. I was unable to take it myself and can relate to being the one in 500 to experience the rare side effect...too bad my luck isn't the same on the lottery.
Glad to hear you ordered your Enterolab testing and have had a Norman already. Did you get the genetic test as well? Since you just started a gluten free diet you should be fine since you'll receive your test kit by early next week and gluten will still be in your system.
Congrats on taking your health into your own hands and ordering the testing and removing gluten from your diet:) Hopefully the results will give you some help as far as how to proceed with your diet. How have you been feeling?
Hugs,
Kelly
I second Zizzle's comments regarding your GI. It is well documented that blood testing for celiac disease has a high percentage of false negatives. I believe I've read as high as 30% or so. Many, many people get diagnosed with Celiac and haven't experienced weight loss too. As a matter of fact everyone I have known that got diagnosed wasn't underweight at the time of diagnosis which is only 5 people but is not a prerequisite for dx.
Lower doses of Entocort have been successful in stopping the D but having some of the unwanted nuisance side effects subside too. I understand why you would choose to discontinue however. I was unable to take it myself and can relate to being the one in 500 to experience the rare side effect...too bad my luck isn't the same on the lottery.
Glad to hear you ordered your Enterolab testing and have had a Norman already. Did you get the genetic test as well? Since you just started a gluten free diet you should be fine since you'll receive your test kit by early next week and gluten will still be in your system.
Congrats on taking your health into your own hands and ordering the testing and removing gluten from your diet:) Hopefully the results will give you some help as far as how to proceed with your diet. How have you been feeling?
Hugs,
Kelly
Kelly - I am actually feeling a lot better. Thanks for asking! I was feeling so fatigued from having D 10 to 15 times a day. I'm really hoping it doesn't come back, even though I know it probably will. How is your daughter? I remember how scary those early days were. I had a needle phobia and would pass out when having blood drawn. Needless to say, I got over that really fast. The lows can be extremely scary. My insurance company finally agreed to let me get the CGM because I was having so many lows. They didn't want to let me get it because my HbA1C was so good. My endocrinologist put me on the I-Pro, which is a CGM that can only be read by the doctor. I wore it for 3 days. It showed a definite swing in my blood sugars. She sent the readout to my insurance company and they approved me for the CGM. Most endocrinologists have the I-Pro. It's something you might want to look into. If you or or your daughter have any questions, please feel free to ask me.
Take care,
Denise[/quote]
Take care,
Denise[/quote]
Denise,
Whoa! You said the magic word - HbAiC, (glycated hemoglobin). I've been meaning to ask my doctor about that, the next time I see him, because according to a recent blog by Dr. Briffa, it appears to be one of the best indicators of one's overall risk of death, (for non-diabetics) - far better than the standard test for fasting blood sugar.
http://www.drbriffa.com/2011/04/27/high ... -of-death/
http://care.diabetesjournals.org/conten ... 0.abstract
I had never heard of it before reading his blog, and your mention of it is only the second time I've ever seen it mentioned.
Tex
Whoa! You said the magic word - HbAiC, (glycated hemoglobin). I've been meaning to ask my doctor about that, the next time I see him, because according to a recent blog by Dr. Briffa, it appears to be one of the best indicators of one's overall risk of death, (for non-diabetics) - far better than the standard test for fasting blood sugar.
http://www.drbriffa.com/2011/04/27/high ... -of-death/
http://care.diabetesjournals.org/conten ... 0.abstract
I had never heard of it before reading his blog, and your mention of it is only the second time I've ever seen it mentioned.
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.
Denise,
Yes, that research focused on glycated hemoglobin levels for individuals who do not have diabetes, IOW, people who don't normally monitor their blood sugar level. You're obviously doing an excellent job of monitoring yours. Those research statistics are probably completely irrelevant for diabetics.
Sorry, I didn't mean to imply that you should be concerned about that. You're already on top of it with your treatment program. That research article only applies to the rest of us.
Great avatar, by the way.
Tex
Yes, that research focused on glycated hemoglobin levels for individuals who do not have diabetes, IOW, people who don't normally monitor their blood sugar level. You're obviously doing an excellent job of monitoring yours. Those research statistics are probably completely irrelevant for diabetics.
Sorry, I didn't mean to imply that you should be concerned about that. You're already on top of it with your treatment program. That research article only applies to the rest of us.
Great avatar, by the way.
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.
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irisheyes13
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- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Denise,
There's your pretty face!
So glad the D has stopped for now and the fatigue has subsided. It can really take a lot out of you physically and emotionally.
Thanks for asking about my daughter. She is doing so well that I keep waiting for the other shoe to drop.
From the second shot in the hospital on, she has done it all herself (with the exception of when we had to do it to show them we could). She rarely complains except when she can't eat and she's hungry or she has to eat and she's not hungry...and who wouldn't complain about that. She is still on a very regimented diet with specific times to inject and eat. Thanks also for the info on the I-Pro. I wasn't aware of such a device but I'll inquire. We have an appt on the 25th to get her A1C checked (the standard follow up as well) and the appt includes discussing the possibility of fast tracking her to a pump (and maybe a CGM). It's a lot to accomplish between now and August if you include allowing time to fight with the insurance company. Her A1C was 11% at diagnosis and she's already in her honeymoon phase now so it is fairly easy to keep her on target although she's had quite a few lows. I'd be curious to see what a CGM would show over a few days. She also has a carb counting class at the hospital the beginning of June. I think it will help give her some flexibility in her eating which is a good thing.
Your A1C's have been right on target- you are doing a fabulous job of keeping everything balanced. I can only hope my daughter does as well.
Thanks for your support and feel free to ask away if you have any questions!
Hugs,
Kelly
There's your pretty face!
So glad the D has stopped for now and the fatigue has subsided. It can really take a lot out of you physically and emotionally.Thanks for asking about my daughter. She is doing so well that I keep waiting for the other shoe to drop.
From the second shot in the hospital on, she has done it all herself (with the exception of when we had to do it to show them we could). She rarely complains except when she can't eat and she's hungry or she has to eat and she's not hungry...and who wouldn't complain about that. She is still on a very regimented diet with specific times to inject and eat. Thanks also for the info on the I-Pro. I wasn't aware of such a device but I'll inquire. We have an appt on the 25th to get her A1C checked (the standard follow up as well) and the appt includes discussing the possibility of fast tracking her to a pump (and maybe a CGM). It's a lot to accomplish between now and August if you include allowing time to fight with the insurance company. Her A1C was 11% at diagnosis and she's already in her honeymoon phase now so it is fairly easy to keep her on target although she's had quite a few lows. I'd be curious to see what a CGM would show over a few days. She also has a carb counting class at the hospital the beginning of June. I think it will help give her some flexibility in her eating which is a good thing.Your A1C's have been right on target- you are doing a fabulous job of keeping everything balanced. I can only hope my daughter does as well.
Thanks for your support and feel free to ask away if you have any questions!
Hugs,
Kelly
Awww, you guys are making me blush! 
I was lucky that a great dr. diagnosed my diabetes. The first thing he said to me was to read everything I could get my hands on (that was before Internet) because I would be my own best advocate concerning my health. I have been that way ever since. It's much easier these days with the Internet. I think some of the drs. I have seen since then wish I would back off, but that's not happening!
Take care,
I was lucky that a great dr. diagnosed my diabetes. The first thing he said to me was to read everything I could get my hands on (that was before Internet) because I would be my own best advocate concerning my health. I have been that way ever since. It's much easier these days with the Internet. I think some of the drs. I have seen since then wish I would back off, but that's not happening!
Take care,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi