I finished a course of Budesonide almost 2 weeks ago. So far I have remained LC symptom-free....fingers crossed.
I hope I don't have to ever take it again (I know it's not a guarantee) I had side effects that were not listed on the literature.
It raised my BP over 20 points. I am usually below normal 116/78 and it went up to 142/88.
Multiple times a day I would feel my heartbeat in the back of my head but it was a strong buzzing pulse feeling.
The worst of all it gave me racing thoughts. I couldn't even read a book because it felt like my mind was spinning. I couldn't focus on the page. Seriously felt like
I was going crazy.
I asked my doctor if the mind racing was normal and she told me that she has patients who tell her they are experiencing the same thing.
Anyone else experiencing these side effects?
I am hopeful that I stay LC symptom-free
Budesonide Side Effects
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hi, Brandy here.
I didn't experience the same side effects but I had brain side effects that were troubling: dizziness, inability to
concentrate, throwing my bills into a stack and unable to pay them, etc.
I knew when I took my last budesonide pill it would be my last pill forever due to side effects.
I got off of budesonide around Feb 2011. Have not had to go back on it.
Brandy
I didn't experience the same side effects but I had brain side effects that were troubling: dizziness, inability to
concentrate, throwing my bills into a stack and unable to pay them, etc.
I knew when I took my last budesonide pill it would be my last pill forever due to side effects.
I got off of budesonide around Feb 2011. Have not had to go back on it.
Brandy
For what it's worth, I'm 1 week into an 8-week course of Budesonide 3MG daily. My LC symptoms SEEM to be improving, and I can't say I've had any problems with concentration, sleep, etc so far. But maybe there are effects which begin to show up later in the course of treatment. I have a long way to go and will report back here if anything changes.
I have the pounding sensation as well.
I had a flare, which didn’t respond to Imodium or Pepto. Sigh. All the way back to square one, couldn’t leave the house due to WD 20+ times daily/nightly and urgency. I’m already on the stage 1 diet, taking D3 and magnesium lotion as I can’t tolerate the tablets. So, to make it through my Dad’s memorial service, I went back on budesonide. As with the first time (in January) it worked within two days. The pulsing tinnitus started in January either from the bude or from the Cipro I had to take in Dec for an infection.
Based in this forum’s advice, I don’t want to quit 9 mgs of bude cold turkey after one month like last time, so I asked the Dr to give me a refill to taper off this time. When I got the prescription, it was 9 mg tablet and the instructions say to take one every other day. This is a different taper than you all describe—3 mg tablets that you slowly taper from 3 to 2 to 1.
Has anyone else tapered 9 mgs every other day? Doesn’t it seem better to also reduce the dosage to try to calm the tinnitus?
I had a flare, which didn’t respond to Imodium or Pepto. Sigh. All the way back to square one, couldn’t leave the house due to WD 20+ times daily/nightly and urgency. I’m already on the stage 1 diet, taking D3 and magnesium lotion as I can’t tolerate the tablets. So, to make it through my Dad’s memorial service, I went back on budesonide. As with the first time (in January) it worked within two days. The pulsing tinnitus started in January either from the bude or from the Cipro I had to take in Dec for an infection.
Based in this forum’s advice, I don’t want to quit 9 mgs of bude cold turkey after one month like last time, so I asked the Dr to give me a refill to taper off this time. When I got the prescription, it was 9 mg tablet and the instructions say to take one every other day. This is a different taper than you all describe—3 mg tablets that you slowly taper from 3 to 2 to 1.
Has anyone else tapered 9 mgs every other day? Doesn’t it seem better to also reduce the dosage to try to calm the tinnitus?
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
I'm puzzled by the dosage variations for the Budesonide. The 2017 Cochrane study says 9 mg/day for 6-8 weeks, and it seems that lots of people on this forum are on 9 mg/day. But my GI doctor prescribed 3 mg/day for 8 weeks. That's quite a difference in the dosage for essentially the same amount of time. Guess I'll need to ask him about that if I can't find any other info before my next visit.
Hi Harmony,
Since no one has responded to this, I'll offer my thoughts.
Has a new budesonide product been recently introduced?. Traditionally, all conventional budesonide capsules have contained 3 mg. The only 9 mg capsule available was Uceris, which was introduced in 2013. But Uceris is a significantly different product. There is a difference not only in the dose per capsule, but in activation criteria. Conventional budesonide capsules become activated in the terminal ileum and the colon. Uceris becomes activated in the distal colon (the lower end of the colon). This is a very important distinction, because it means that since Uceris is not available to be absorbed in the small intestine, it never gets into the bloodstream, where it will be circulated. That implies that no dose tapering is required for Uceris. By comparison, roughly 20 % of conventional budesonide enters the blood stream. Therefore, after more than a few months of use, adrenal function has become affected, so doses of conventional budesonide must be tapered when ending a treatment, or there is a high risk of severe health consequences (due to low cortisol production).
Therefore, if you're taking Uceris, yes, you can taper it any way you want, without any need for worry. If it's conventional budesonide though, you're probably going to have problems remaining in remission with that particular formulation, because it doesn't offer adequate tapering options for maintaining remission of MC when ending a budesonide treatment. But that's just my opinion, and I'm not a doctor.
Tex
Since no one has responded to this, I'll offer my thoughts.
Has a new budesonide product been recently introduced?. Traditionally, all conventional budesonide capsules have contained 3 mg. The only 9 mg capsule available was Uceris, which was introduced in 2013. But Uceris is a significantly different product. There is a difference not only in the dose per capsule, but in activation criteria. Conventional budesonide capsules become activated in the terminal ileum and the colon. Uceris becomes activated in the distal colon (the lower end of the colon). This is a very important distinction, because it means that since Uceris is not available to be absorbed in the small intestine, it never gets into the bloodstream, where it will be circulated. That implies that no dose tapering is required for Uceris. By comparison, roughly 20 % of conventional budesonide enters the blood stream. Therefore, after more than a few months of use, adrenal function has become affected, so doses of conventional budesonide must be tapered when ending a treatment, or there is a high risk of severe health consequences (due to low cortisol production).
Therefore, if you're taking Uceris, yes, you can taper it any way you want, without any need for worry. If it's conventional budesonide though, you're probably going to have problems remaining in remission with that particular formulation, because it doesn't offer adequate tapering options for maintaining remission of MC when ending a budesonide treatment. But that's just my opinion, and I'm not a doctor.
Tex
Hi Spec,
The labeled dose of budesonide is indeed 9 mg per day (at least initially). I'm guessing your GI doc is naive enough to think that since the inflammation that's associated with MC can only be seen through a microscope, it's a much easier-to-control disease that the other IBDs. Or maybe he thinks you have a "mild" case, so it should be easy to treat.
The experience of many hundreds of MC patients who have used budesonide and posted about it here show that unless you are one of those rare individuals who are extremely sensitive to budesonide (can't tolerate a normal dose), 3 mg as a starting dose is a complete waste of time and money. We have seen only two members here in the last 14 years who were that sensitive to budesonide). Unless he has a real reason that I'm not aware of, it appears that your GI doc doesn't understand how to use corticosteroids when treating IBDs and he's probably afraid of them. But that's just my opinion, FWIW.
Tex
The labeled dose of budesonide is indeed 9 mg per day (at least initially). I'm guessing your GI doc is naive enough to think that since the inflammation that's associated with MC can only be seen through a microscope, it's a much easier-to-control disease that the other IBDs. Or maybe he thinks you have a "mild" case, so it should be easy to treat.
The experience of many hundreds of MC patients who have used budesonide and posted about it here show that unless you are one of those rare individuals who are extremely sensitive to budesonide (can't tolerate a normal dose), 3 mg as a starting dose is a complete waste of time and money. We have seen only two members here in the last 14 years who were that sensitive to budesonide). Unless he has a real reason that I'm not aware of, it appears that your GI doc doesn't understand how to use corticosteroids when treating IBDs and he's probably afraid of them. But that's just my opinion, FWIW.
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.
Thanks Tex. That's good information and I appreciate your taking the time. I've been on the fence about questioning the dosage since this is all new to me, but I'm leaning in that direction.
He's been my GI doc for many years and I've always had confidence in him insofar as routine care is concerned. Basically he's done 3 routine colonoscopies for me over the years, and treated me for an ugly intestinal infection I developed one time, (I do some periodic travel to rural areas third world countries and picked up a nasty bug on one of those trips a couple of years back). It's even possible that episode set things in motion for the eventual development of IC.
His PA actually suggested MC as a possibility at my initial visit for this complaint, based entirely on my description of my symptoms. But I think mine may be a little out of the norm since I've never had any pain, cramping, nausea, or weight loss. Not sure how significant that may be or if he thought it should be taken into account in the treatment. Anyhow, the sigmoidoscopy & biopsy followed by the pathology report confirmed the LC, so here we are.
I'm accustomed to dealing with physicians (mostly pathologists) over the past 30 years in business. Some docs are open-minded and willing to have a discussion when the patient raises questions, but a large percentage either brush off patient questions/suggestions or take umbrage at the idea that a patient may have something medically significant to add to the conversation. And many are deeply resentful of the idea that a suggestion from an internet forum or even a recent study from a reliable source might uncover something they've missed or dismissed. I'm not sure which category my GI doc falls into, but I suppose I'm going to find out before long.
He's been my GI doc for many years and I've always had confidence in him insofar as routine care is concerned. Basically he's done 3 routine colonoscopies for me over the years, and treated me for an ugly intestinal infection I developed one time, (I do some periodic travel to rural areas third world countries and picked up a nasty bug on one of those trips a couple of years back). It's even possible that episode set things in motion for the eventual development of IC.
His PA actually suggested MC as a possibility at my initial visit for this complaint, based entirely on my description of my symptoms. But I think mine may be a little out of the norm since I've never had any pain, cramping, nausea, or weight loss. Not sure how significant that may be or if he thought it should be taken into account in the treatment. Anyhow, the sigmoidoscopy & biopsy followed by the pathology report confirmed the LC, so here we are.
I'm accustomed to dealing with physicians (mostly pathologists) over the past 30 years in business. Some docs are open-minded and willing to have a discussion when the patient raises questions, but a large percentage either brush off patient questions/suggestions or take umbrage at the idea that a patient may have something medically significant to add to the conversation. And many are deeply resentful of the idea that a suggestion from an internet forum or even a recent study from a reliable source might uncover something they've missed or dismissed. I'm not sure which category my GI doc falls into, but I suppose I'm going to find out before long.
Hello Tex,
As usual, you are spot on!
My prescription says budesonide, but the literature says “generic for Uceris.” I didn’t even notice it, and I am so new at this I didn’t remember that one type of budesonide needs to be tapered and another does not. Your description makes perfect sense. I checked and my GI Doc did prescribe one month of Entocort in January without a taper. Perhaps that is why I relapsed within 3 months? Does that mean that the Uceris version could actually be effective in only 30 days? I would think I should go ahead and use the second prescription to take it every other day to get a little more healing with the stage one diet.
You are a wealth of information, Tex! Thank you so much for everything you do to help all of us on this frustrating journey to healing. I can’t imagine how much worse off I would be without this forum and your books.
As usual, you are spot on!
My prescription says budesonide, but the literature says “generic for Uceris.” I didn’t even notice it, and I am so new at this I didn’t remember that one type of budesonide needs to be tapered and another does not. Your description makes perfect sense. I checked and my GI Doc did prescribe one month of Entocort in January without a taper. Perhaps that is why I relapsed within 3 months? Does that mean that the Uceris version could actually be effective in only 30 days? I would think I should go ahead and use the second prescription to take it every other day to get a little more healing with the stage one diet.
You are a wealth of information, Tex! Thank you so much for everything you do to help all of us on this frustrating journey to healing. I can’t imagine how much worse off I would be without this forum and your books.
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Hi Spec,
Regarding symptoms, we're all different. Some of us have debilitating pain and nausea, while others have nothing but diarrhea. But whatever symptoms we have, seem to be just as persistent, regardless of what the symptoms are, so we really can't say that those indicate "mild" cases.
I'm in complete agreement with you — most doctors assume (and justifiably so), that anyone who doesn't have an "MD" tacked on behind their name is not worth listening to as far as medical knowledge is concerned, and specialists seem to be the worst because they believe that the "specialty certificate" hanging on their wall makes them an expert. Actually, it only makes them an "expert" in a court of law. Far too many of them become a "closed-minded expert" and they don't keep an open mind to new developments unless their drug rep informs them of the developments.
At any rate, it behooves us to use a huge helping of tact when dealing with our gastroenterologists. MC is a rather unique disease in that anyone who reads posts on this site for a month or so will tend to know far more about successfully treating the disease and actually maintaining remission indefinitely than probably 99 % of the GI docs out there. So we have to be careful about revealing our knowledge about the disease lest we intimidate or irritate them. It's usually very helpful to phrase our suggestions so that our doc can feel as though the suggestions came from her or him. Wording our suggestions such as, "What do you think about trying this?", or, "How do you feel about tapering the dose a little longer than normal in order to ease the transition?", can be helpful in many situations. It's best to avoid stepping on any toes as much as possible because one never knows when we might need the services of that doctor in the future.
GI docs let me down regarding this disease, but I have to say that they've saved my hide a couple of times when dealing with other GI problems.
Tex
Regarding symptoms, we're all different. Some of us have debilitating pain and nausea, while others have nothing but diarrhea. But whatever symptoms we have, seem to be just as persistent, regardless of what the symptoms are, so we really can't say that those indicate "mild" cases.
I'm in complete agreement with you — most doctors assume (and justifiably so), that anyone who doesn't have an "MD" tacked on behind their name is not worth listening to as far as medical knowledge is concerned, and specialists seem to be the worst because they believe that the "specialty certificate" hanging on their wall makes them an expert. Actually, it only makes them an "expert" in a court of law. Far too many of them become a "closed-minded expert" and they don't keep an open mind to new developments unless their drug rep informs them of the developments.
At any rate, it behooves us to use a huge helping of tact when dealing with our gastroenterologists. MC is a rather unique disease in that anyone who reads posts on this site for a month or so will tend to know far more about successfully treating the disease and actually maintaining remission indefinitely than probably 99 % of the GI docs out there. So we have to be careful about revealing our knowledge about the disease lest we intimidate or irritate them. It's usually very helpful to phrase our suggestions so that our doc can feel as though the suggestions came from her or him. Wording our suggestions such as, "What do you think about trying this?", or, "How do you feel about tapering the dose a little longer than normal in order to ease the transition?", can be helpful in many situations. It's best to avoid stepping on any toes as much as possible because one never knows when we might need the services of that doctor in the future.
GI docs let me down regarding this disease, but I have to say that they've saved my hide a couple of times when dealing with other GI problems.
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.
Harmony,
I doubt that Uceris is more effective than conventional budesonide (the dose is the same, and it treats less of the intestinal tract), so a shorter treatment period is not likely to bring lasting remission. I believe you're right — it would probably boost the odds of successfully remaining in remission after weaning off the Uceris if you add another month of treatment at a reduced dose. The extended time (as you surmise) is not to avoid adverse side effects from weaning too quickly, but to allow more time for healing so that the diet will be able to take over when the budesonide treatment is completely ended. Many members who were unable to remain in remission after a two or three-month treatment, are successful when they draw out the tapering process to five or six months (or longer). At least that's been our experience.
Currently, we don't have enough accumulated experience to be able to say whether Uceris is better or worse (than conventional budesonide) for treating MC.
Thanks for the kind words.
Tex
I doubt that Uceris is more effective than conventional budesonide (the dose is the same, and it treats less of the intestinal tract), so a shorter treatment period is not likely to bring lasting remission. I believe you're right — it would probably boost the odds of successfully remaining in remission after weaning off the Uceris if you add another month of treatment at a reduced dose. The extended time (as you surmise) is not to avoid adverse side effects from weaning too quickly, but to allow more time for healing so that the diet will be able to take over when the budesonide treatment is completely ended. Many members who were unable to remain in remission after a two or three-month treatment, are successful when they draw out the tapering process to five or six months (or longer). At least that's been our experience.
Currently, we don't have enough accumulated experience to be able to say whether Uceris is better or worse (than conventional budesonide) for treating MC.
Thanks for the kind words.
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.