Hello everyone.
I know that a lot of you who have been on Entocort said that you did not have any trouble taking it as far as side effects so, but I am having a hard time. I feel like lousy, headache, nausea and tired 24/7. Today I was driving and everything was fuzzy. I just wanted to know if anyone else had these problems.
On the plus side I have not had an explosion since last Friday and am only having about 5 bm's a day (solid no water - yeah). So I guess it is worth it in the long run. I think that my GF,DF & SF diet has a lot to do with it. I found out last week that my Bumble Bee tuna had soy in it and I practically live on tuna (I don't eat red meat and chicken doesn't sit very well).
Rose
Entocort Side Effects
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rose,
Entocort seems to be helping your symptoms, but the side effects that you describe are not good.
SIDE EFFECTS: Headache, nausea, dizziness, increased sweating, stomach upset, or may occur. If any of these effects persist or worsen, notify your doctor. Tell your doctor immediately if any of these serious side effects occur: trouble breathing, fever, pain (e.g., back, stomach/abdominal, or generalized pain). Tell your doctor immediately if any of these unlikely but serious side effects occur: chest pain, swelling of the tongue or face/legs/arms, vision problems, easy bruising, tingling or numbness of the hands/feet, tremor, unusually fast heartbeat, trouble sleeping, mental/mood changes, rash, acne, urination problems (e.g., inability to urinate or increase in nighttime urination), changes in menstrual period, increased hair growth (body hair). Contact your doctor if you experience any of the signs of low steroid levels: unusual weakness, weight loss, vomiting, fainting, dizziness. If you notice other effects not listed above, contact your doctor or pharmacist.
From:
http://www.medicinenet.com/budesonide-oral/article.htm
Please call your doctor's office ASAP, and tell them that you are having those symptoms from Entocort, especially the vision problem.
Tex
Entocort seems to be helping your symptoms, but the side effects that you describe are not good.
SIDE EFFECTS: Headache, nausea, dizziness, increased sweating, stomach upset, or may occur. If any of these effects persist or worsen, notify your doctor. Tell your doctor immediately if any of these serious side effects occur: trouble breathing, fever, pain (e.g., back, stomach/abdominal, or generalized pain). Tell your doctor immediately if any of these unlikely but serious side effects occur: chest pain, swelling of the tongue or face/legs/arms, vision problems, easy bruising, tingling or numbness of the hands/feet, tremor, unusually fast heartbeat, trouble sleeping, mental/mood changes, rash, acne, urination problems (e.g., inability to urinate or increase in nighttime urination), changes in menstrual period, increased hair growth (body hair). Contact your doctor if you experience any of the signs of low steroid levels: unusual weakness, weight loss, vomiting, fainting, dizziness. If you notice other effects not listed above, contact your doctor or pharmacist.
From:
http://www.medicinenet.com/budesonide-oral/article.htm
Please call your doctor's office ASAP, and tell them that you are having those symptoms from Entocort, especially the vision problem.
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.
Rose,
There's always a chance that your doctor may tell you that it's safe to continue to use Entocort for a while longer, to see if those issues will go away, but he or she definitely needs to be aware of what's happening, in order to be able to accurately assess the risk.
Now that you've cut out the soy in the tuna that you were eating, maybe you'll be able to fine tune your diet well enough that you won't need the Entocort at all. Good luck.
As always, you're most welcome.
Tex
There's always a chance that your doctor may tell you that it's safe to continue to use Entocort for a while longer, to see if those issues will go away, but he or she definitely needs to be aware of what's happening, in order to be able to accurately assess the risk.
Now that you've cut out the soy in the tuna that you were eating, maybe you'll be able to fine tune your diet well enough that you won't need the Entocort at all. Good luck.
As always, you're most welcome.
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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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Thank you Tex (loved the tuna pun BTW) and Maggie.
I have not heard back from the GI's office as yet. Maggie, did one of your eyes water. Since I started taking this stuff my right eye is like a faucet and now under my eye is red and puffy. I have not been rubbing it, just dabbing the corner with a tissue. It almost feels like a rash. I go to the Rheumatologist tomorrow and I am going to have him look at my eye, but I didn't know if this is from the Entocort as well since this started the afternoon I started taking this stuff. Just thought I would ask.
Love to all,
Rose
I have not heard back from the GI's office as yet. Maggie, did one of your eyes water. Since I started taking this stuff my right eye is like a faucet and now under my eye is red and puffy. I have not been rubbing it, just dabbing the corner with a tissue. It almost feels like a rash. I go to the Rheumatologist tomorrow and I am going to have him look at my eye, but I didn't know if this is from the Entocort as well since this started the afternoon I started taking this stuff. Just thought I would ask.
Love to all,
Rose
Rose,
The watery eye sure sounds like another symptom of an allergic reaction to the Entocort. If your doctor doesn't return your call, your pharmacist is qualified to advise you. He or she probably stays up to date on the side effects of most drugs much better than most doctors, anyway.
Love,
Tex
The watery eye sure sounds like another symptom of an allergic reaction to the Entocort. If your doctor doesn't return your call, your pharmacist is qualified to advise you. He or she probably stays up to date on the side effects of most drugs much better than most doctors, anyway.
Love,
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.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hmmmmmm. As unresponsive as they are, it's a good thing that you aren't experiencing convulsions, or anaphylactic shock. 
Tex
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,
Boy you aren't kidding. I still have not heard from them and I called them again this am. The good news is that my eye is not watering anymore, the bad is that my vision is still "fuzzy" and I feel really out of it and nauseated. I want to stop taking it and have only been on it since Saturday, I don't know if I should down the dosage or cut it out completely. Also, my Rheumatologist wants me to take a break from Humira and do methotrexate, but since I have elevated liver enzymes he wants the all clear from my GI first (of course it would help if they would call me back).
I am so frustrated.
Love,
Rose
Boy you aren't kidding. I still have not heard from them and I called them again this am. The good news is that my eye is not watering anymore, the bad is that my vision is still "fuzzy" and I feel really out of it and nauseated. I want to stop taking it and have only been on it since Saturday, I don't know if I should down the dosage or cut it out completely. Also, my Rheumatologist wants me to take a break from Humira and do methotrexate, but since I have elevated liver enzymes he wants the all clear from my GI first (of course it would help if they would call me back).
I am so frustrated.
Love,
Rose
Rose,
The only legitimate excuses I can think of that might prevent a doctor from responding promptly to a patient's phone call about an adverse reaction to a drug that he had prescribed, would be:
1. He's in jail
2. He's experiencing a medical emergency himself
3. He skipped the country (Wait - that's not really a "legitimate" excuse).
Anyway, the point is, it's beginning to become painfully obvious that he really doesn't seem to care what happens to his patients, as a result of his actions. If he doesn't even have time to respond to your call about your adverse reaction to Entocort, (the least he could do is to have a nurse relay a response for him), then how would he find the time to review all of your medical records, and make an intelligent decision about whether or not it would be safe for you to switch from Humira to methotrexate? Frankly, in view of the circumstances, I wouldn't feel comfortable allowing him to make that decision, if I were in your shoes.
Getting back to the Entocort reaction, Maggie recently had a similar reaction to Entocort, and she tried cutting down the dose, in order to reduce the negative side effects, but she never was able to find a dose that provided any significant benefits, without causing an intolerable level of adverse side effects, so she stopped taking it. When we have an allergic reaction to a drug, it's very similar to having an allergic reaction to anything else - the only way we will get relief, is to avoid whatever it is that we're allergic to.
Since you have been taking Entocort for only about a week, you can safely stop taking it without worrying about any withdrawal effects. If you were to take it for much longer, (say, about a month, or so), then you would have to slowly taper down the dose, and gradually withdraw from it, before completely stopping the treatment. Since I'm not a medical professional, I can't advise you on what to do about medications, but I can tell you what I would do if I were in your shoes: I would stop taking it, and I would devote some very serious effort into carefully controlling my diet, to cut out any and all traces of any food intolerances that I might have. Since you seem to be allergic to Entocort, diet is really the only practical, (and safe), option left. Frankly, I'm kind of surprised that Humira didn't control your MC symptoms. The fact that it didn't, suggests to me that it may not be possible to find a med that will safely control your MC symptoms, because Humira is a "big gun", when it comes to immune system suppressants, and all of the most effective drugs available to treat the IBDs are immune system suppressants.
If you want a medical opinion before stopping the Entocort treatment, (which is certainly generally a good idea), you might try calling your GP. Since your GI doc prescribed it, though, it's really his duty to provide followup support. In the absence of his support, you are stuck with trying to find support wherever you can. If you decide to continue to take Entocort, and your symptoms get worse, don't forget that the ER is always available to try to resolve doctor's mistakes.
You definitely need a new GI doc.
Tex
The only legitimate excuses I can think of that might prevent a doctor from responding promptly to a patient's phone call about an adverse reaction to a drug that he had prescribed, would be:
1. He's in jail
2. He's experiencing a medical emergency himself
3. He skipped the country (Wait - that's not really a "legitimate" excuse).
Anyway, the point is, it's beginning to become painfully obvious that he really doesn't seem to care what happens to his patients, as a result of his actions. If he doesn't even have time to respond to your call about your adverse reaction to Entocort, (the least he could do is to have a nurse relay a response for him), then how would he find the time to review all of your medical records, and make an intelligent decision about whether or not it would be safe for you to switch from Humira to methotrexate? Frankly, in view of the circumstances, I wouldn't feel comfortable allowing him to make that decision, if I were in your shoes.
Getting back to the Entocort reaction, Maggie recently had a similar reaction to Entocort, and she tried cutting down the dose, in order to reduce the negative side effects, but she never was able to find a dose that provided any significant benefits, without causing an intolerable level of adverse side effects, so she stopped taking it. When we have an allergic reaction to a drug, it's very similar to having an allergic reaction to anything else - the only way we will get relief, is to avoid whatever it is that we're allergic to.
Since you have been taking Entocort for only about a week, you can safely stop taking it without worrying about any withdrawal effects. If you were to take it for much longer, (say, about a month, or so), then you would have to slowly taper down the dose, and gradually withdraw from it, before completely stopping the treatment. Since I'm not a medical professional, I can't advise you on what to do about medications, but I can tell you what I would do if I were in your shoes: I would stop taking it, and I would devote some very serious effort into carefully controlling my diet, to cut out any and all traces of any food intolerances that I might have. Since you seem to be allergic to Entocort, diet is really the only practical, (and safe), option left. Frankly, I'm kind of surprised that Humira didn't control your MC symptoms. The fact that it didn't, suggests to me that it may not be possible to find a med that will safely control your MC symptoms, because Humira is a "big gun", when it comes to immune system suppressants, and all of the most effective drugs available to treat the IBDs are immune system suppressants.
If you want a medical opinion before stopping the Entocort treatment, (which is certainly generally a good idea), you might try calling your GP. Since your GI doc prescribed it, though, it's really his duty to provide followup support. In the absence of his support, you are stuck with trying to find support wherever you can. If you decide to continue to take Entocort, and your symptoms get worse, don't forget that the ER is always available to try to resolve doctor's mistakes.
You definitely need a new GI doc.
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 you all for your input.
Tex I am with you on this one, I think that I am just going to stop taking it period. I have removed all soy from my diet (already GF & DF) and I think that this is the safest route to go. I hate living in the bathroom, but at least I could function normally. I know that can't live like this and take care of two kids in elementary school (and dh, of course). Besides, I always felt that my GI just "washed his hands of me" when he told me that I was his only cc patient that did not respond to treatment. I did not get a good "vibe" from him this last visit especially when he did not think that food intolerances (according to him I have no allergies) have anything to do with cc.
Thanks again.
Love,
Rose
And yes, I am looking for a new GI
Tex I am with you on this one, I think that I am just going to stop taking it period. I have removed all soy from my diet (already GF & DF) and I think that this is the safest route to go. I hate living in the bathroom, but at least I could function normally. I know that can't live like this and take care of two kids in elementary school (and dh, of course). Besides, I always felt that my GI just "washed his hands of me" when he told me that I was his only cc patient that did not respond to treatment. I did not get a good "vibe" from him this last visit especially when he did not think that food intolerances (according to him I have no allergies) have anything to do with cc.
Thanks again.
Love,
Rose
And yes, I am looking for a new GI
Unfortunately, I believe you are quite correct. Most GI docs seem to become so frustrated, when none of their prescribed treatments will work for a patient, that they tend to blame the patient for the problem. I have no idea if that misplaced blame is intentional, or subconscious, but when you analyze their actions, and their attitudes, it's clear that they do blame their patients for their own failure to resolve the patient's symptoms. Also, GI docs often seem to choose to try to "punish" any patients who ignore their advice, or those who pretend to know things about their disease that the GI doc himself, (or herself), doesn't know, (such as the fact that food intolerances can cause MC symptoms - that upsets a lot of ignorant doctors, unfortunatey).Rose wrote:Besides, I always felt that my GI just "washed his hands of me" when he told me that I was his only cc patient that did not respond to treatment. I did not get a good "vibe" from him this last visit especially when he did not think that food intolerances (according to him I have no allergies) have anything to do with cc.
You're most welcome, and good luck in your search for a GI doc who actually understands MC.
Love,
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.