Just wondering...I read a lot on here about tapering Entocort. I am on Uceris (another form of budesonide) and they say there is no tapering and I don't understand why. Should I try to taper somehow (it's only one 9mg pill a day) even if my doctor says it's unnecessary?
Also, I have had a side discomfort for months. It has gotten worse at times and better at times but always seems to be there. I've had two MRIs, two ultrasounds and a bunch of other tests and my doctor has no idea what it is. At first it seemed gall bladder related due to where it was hurting but my gb checked out fine. At this point I think my doctor just doesn't know and is saying it's related to my MC and it's intestinal. However, I am feeling better these days....finally no loose stools and just better in general. The last week though my side has really been acting up. If it's intestinal, why would it be worse when my MC seems more under control? Has anyone else encountered something similar?
2 Questions...Uceris and side pain
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robinc2525
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Hi Robin,
I'm just making a WAEG here, but I'm pretty sure that the reason why Uceris does not require a taper period is because Uceris was developed for UC, and unlike the other IBDs, UC primarily affects the distal colon. That implies that the drug may not become activated until it reaches the descending colon (or somewhere thereabouts). Entocort EC, by contrast, begins to activate in the terminal ileum, where it can be absorbed into the bloodstream.
Since for all practical purposes, only water and electrolytes are absorbed in the colon, it's unlikely that any significant amount of budesonide from Uceris will be absorbed into the bloodstream. As long as budesonide is not absorbed into the bloodstream, there is no way that it can affect the adrenals, ergo, no dose tapering is required.
I'm confused about the location of your "side discomfort". Gallbladder pain would be just to the right of center, not really a side pain. In that location (where the gallbladder is located), I can't visualize a problem (other than gallbladder disease) that would be MC-associated. If the pain were more centered, an inflamed pericardium would be a possibility. If the pain were in your spleen, for example, it should be on the left side, not the right side. I can't picture an organ toward the right side (past the gallbladder) that could be inflamed (other than a lung, but that wouldn't be MC-related, either.
Tex
I'm just making a WAEG here, but I'm pretty sure that the reason why Uceris does not require a taper period is because Uceris was developed for UC, and unlike the other IBDs, UC primarily affects the distal colon. That implies that the drug may not become activated until it reaches the descending colon (or somewhere thereabouts). Entocort EC, by contrast, begins to activate in the terminal ileum, where it can be absorbed into the bloodstream.
Since for all practical purposes, only water and electrolytes are absorbed in the colon, it's unlikely that any significant amount of budesonide from Uceris will be absorbed into the bloodstream. As long as budesonide is not absorbed into the bloodstream, there is no way that it can affect the adrenals, ergo, no dose tapering is required.
I'm confused about the location of your "side discomfort". Gallbladder pain would be just to the right of center, not really a side pain. In that location (where the gallbladder is located), I can't visualize a problem (other than gallbladder disease) that would be MC-associated. If the pain were more centered, an inflamed pericardium would be a possibility. If the pain were in your spleen, for example, it should be on the left side, not the right side. I can't picture an organ toward the right side (past the gallbladder) that could be inflamed (other than a lung, but that wouldn't be MC-related, either.
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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robinc2525
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Thank you Tex, I think that explains why the Uceris hasn't seemed to work as well for me the way other people say Entocort does. I have been on it 3 months and only in the last two weeks have I had relief and I actually think that's because of my diet. I have a suspicion if I stopped the Uceris I wouldn't see much change.
As for my "side pain"...sometimes it feels like there is something just below/under my right ribcage (location of gb) that causes me discomfort. Often I feel it in the back also in the same area. Sometimes it feels lower down, kind of the same height as my belly button but more to the side (prompting the pelvic ultrasound to see if it was related to ovaries). When it is bad I have a lot of trouble getting comfortable when I lay down. I can't lay on either side or my back without it bothering me. I just wish I knew what it is!
As for my "side pain"...sometimes it feels like there is something just below/under my right ribcage (location of gb) that causes me discomfort. Often I feel it in the back also in the same area. Sometimes it feels lower down, kind of the same height as my belly button but more to the side (prompting the pelvic ultrasound to see if it was related to ovaries). When it is bad I have a lot of trouble getting comfortable when I lay down. I can't lay on either side or my back without it bothering me. I just wish I knew what it is!
You're probably right. Ever since I first read about Uceris, I've been skeptical about using it to treat MC, because MC is typically most active in the terminal ileum and the right side colon, but it often affects most of the GI tract, so treating only the south end of the GI tract strikes me as inadequate.
That certainly sounds like gallbladder-related pain. I wonder if the common bile duct might be inflamed. When I was reacting, I often/usually had pain just below there, as though my cecum may have been inflamed. The good news is that those pains usually fade away as we recover, and our intestines heal.
Tex
That certainly sounds like gallbladder-related pain. I wonder if the common bile duct might be inflamed. When I was reacting, I often/usually had pain just below there, as though my cecum may have been inflamed. The good news is that those pains usually fade away as we recover, and our intestines heal.
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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ladyathome
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I thought I would chime in as well because it always makes me feel better hearing someone else has had similar symptoms. When I was re-acting I had those pains on my right side, but I have no gallbladder (or appendix) to point to. I can still remember weeks of it hurting, then it would just dissipate.
Lately, even though I'm not re-acting, I'm having a pain in my lower left abdomen and I can feel it in my back at times as well. It comes and goes, but the pain seems to mainly occur in the evenings. Sometimes I think it's gas, other times I think my stool is harder than normal and maybe that area is inflamed...who knows. As you say, getting comfortable in bed is an issue. Again, I'm sure I haven't helped you - other than to say I've been there...and maybe your misery wants some company?
Lately, even though I'm not re-acting, I'm having a pain in my lower left abdomen and I can feel it in my back at times as well. It comes and goes, but the pain seems to mainly occur in the evenings. Sometimes I think it's gas, other times I think my stool is harder than normal and maybe that area is inflamed...who knows. As you say, getting comfortable in bed is an issue. Again, I'm sure I haven't helped you - other than to say I've been there...and maybe your misery wants some company?
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robinc2525
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Ladyathome...thank you it actually does help to know that someone else has similar pain, especially since you have no gb. And of course there is hope that it may go away at any time! Very interesting and thank you for chiming in.
Tex, I had an MRCP to look at the bile ducts and nothing was found. They went on to do an MRI of my liver because they saw something on it but it turned out to be a benign hemangioma which I guess is very common.
When I had my colonoscopy, the biopsies of the ileum were normal showing no abnormalities. I had "changes consistent with MC" in the right colon, and the sigmoid biopsies showed "chronic colitis". The rectum showed nothing abnormal. Since the ileum seemed fine I think that's why my doc went with the Uceris. A lot of this doesn't make sense to me though, I hear people talk about lymphocytic and collagenous and other types of MC and mine wasn't specified which kind. I don't know if it really matters, since all seem to have the same symptoms. Do you think I would do better on Entocort since MC was specifically found in the right colon?
Now it seems that I tested "weakly positive" for SIBO (the doctor's office just left me a message today). They want me to go on an antibiotic which scares me....I am not sure what to do about that.
Tex, I had an MRCP to look at the bile ducts and nothing was found. They went on to do an MRI of my liver because they saw something on it but it turned out to be a benign hemangioma which I guess is very common.
When I had my colonoscopy, the biopsies of the ileum were normal showing no abnormalities. I had "changes consistent with MC" in the right colon, and the sigmoid biopsies showed "chronic colitis". The rectum showed nothing abnormal. Since the ileum seemed fine I think that's why my doc went with the Uceris. A lot of this doesn't make sense to me though, I hear people talk about lymphocytic and collagenous and other types of MC and mine wasn't specified which kind. I don't know if it really matters, since all seem to have the same symptoms. Do you think I would do better on Entocort since MC was specifically found in the right colon?
Now it seems that I tested "weakly positive" for SIBO (the doctor's office just left me a message today). They want me to go on an antibiotic which scares me....I am not sure what to do about that.
Maybe, but there are never any guarantees when treating this disease, because not everyone responds to budesonide.Robin wrote:Do you think I would do better on Entocort since MC was specifically found in the right colon?
My guess is that SIBO is probably somewhat common with MC, so I'm not sure if it should be treated with an antibiotic or not.
For most of us it seems to resolve as we bring the inflammation under control and our digestive system begins working more normally again.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.
I also have had extreme side pain. It seems to be worse when I am in a flare. However, I found out what the pain was from. Two years ago I had emergency surgery and they found that I had an intussusception (telescoping bowel). It can come and go as it pleases. It's apparently very common to have as a child but not common as an adult. Anyways when I am in a flare, it acts up. It is so painful! And I feel it in my back as well.
It might be something you can ask your doctor about. They check mine every few months through ultrasounds. They cannot operate on it until I have my LC under control.
It might be something you can ask your doctor about. They check mine every few months through ultrasounds. They cannot operate on it until I have my LC under control.