Hi! I was just turned onto this forum by someone who also is on a Crohn's forum. I don't have Crohn's but do have collangenous colitis, diagnosed last August. Originally, I was diagnosed with lymphocytic colitis many years ago and was first put on Asacol. It didn't work for me. I was switched over to Entocort, then budesonide when it was available, and have been on it continuously for years. I never had a remission. As I have not been having relief from it, my family doctor told me to stop using it (cold-turkey!) and to begin sulfazine about a week and a half ago. The sulfazine made me very tired and nauseated, but 3 days into using it and stopping the budesonide, my muscles and joints became very painful. I felt awful! After a week I called my doc's office, and as my doc was out that week, I talked to her PA, who really didn't ask many questions. He said I could stop the sulfazine. I saw my GI doc's PA Friday as the doc was on maternity leave, and he put me on cholystyramine. So, I'm now on that to try to control the uncontrollabe diarrhea. I have not had diarrhea, per se, but have had gas with this along with frequent bowel movements in the form of soft stools, mostly small pellet-like things.
So, I have since learned I should not have been taken off the budesonide cold-turkey. I thought my symptoms of pain were due to side effects from the sulfazine, but now wonder if it is withdrawal from the budesonide. I have heard going off it quickly can cause adrenal damage. What kind of damage does that do? Anything else?
I did try the Leaky Gut Diet Cure for the recommended 3 months. I saw NO change in my symptoms. I removed all gluten, dairy (I'm lactose intolerant anyway), soy, and other things prohibited, ate as organically as possible, took digestive supplements, and L-glutamine. As I said, I saw no difference.
I don't remember when this actually all started, but of note, I did have ovarian cancer 17 years ago and did have radiation therapy along with chemotherapy. This may well be playing a factor here.
Anyway, I'd really like some suggestions as to what else to try. The GI PA said there was a brand new drug out that I could try if the cholestyramine didn't help, but I'm sure my insurance will not cover it.
Thanks!
Newbie with lots of questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm the one who directed you here. Glad you found the site with ease. This is my primary online support group b/c I've only ever been Dx'd with MC. I read up on the Chrons Forum b/c my doctor has pushed those drugs and I want to be as educated as possible.
Best wishes to getting the answers you need here! Tex is the forum leader and he is very informed (more so than many GIs). Hopefully, he or others will chime in soon to help.
Best wishes to getting the answers you need here! Tex is the forum leader and he is very informed (more so than many GIs). Hopefully, he or others will chime in soon to help.
Hi Luanne,
Welcome to our internet family. I'm sorry that you have been dealing with this disease for so many years without remission. Unfortunately, the longer we remain without effective treatment, the more damage that accrues to our intestines, and the longer it can take (and the more difficult it usually becomes) to achieve full remission. In a nutshell, here's a quick overview of what we are dealing with:
First of all, there are only a handful of GI specialists in this country who truly understand how to treat the disease, and that is by far the biggest obstacle to treating the disease successfully, because it's not easy to accept the realization that the advice we receive from our doctor (especially a specialist) is just plain wrong. For example, many/most GI specialists still insist that diet has nothing to do with this disease, but slowly, more and more of them are beginning to realize that diet in fact plays a major role. Most of the drugs that they prescribe to treat the disease don't even address the inflammation that causes MC/CC/LC (since all forms of the disease have the same clinical symptoms and respond to the same treatment, we usually just refer to all of them as MC on this board).
The anti-inflammatories that are prescribed to treat the disease can mask the symptoms (by suppressing the inflammation) for many/most patients; however, they cannot prevent new inflammation from developing. That means that soon after the medications are discontinued, the clinical symptoms will return. But as you have discovered, alone, those drugs don't stop the symptoms for many of us. For many of us, it takes more than just medications — we have to stop the inflammation from being propagated in the first place.
Here, we do that by following a very strict diet that avoids all of our food sensitivities, and for the most severe cases, an effective medication may also be necessary.
But first things first. If you have been taking a full dose of budesonide for at least a year or more, stopping cold turkey is definitely very, very risky, because your adrenals may not be able to resume producing cortisol soon enough to prevent a major crash of various normal body functions. Your doctor made a very serious mistake. You need to consult with an adrenal expert ASAP, before all the budesonide is eliminated from your body (it can take a few weeks for it to be completely purged). This is extremely important. Please don't put it off. I would assume that this would fall under the domain of endocrinology, but if you can't see an endocrinologist promptly, an experienced internist should understand the problem. If you start feeling really sick (erratic blood pressure, heart palpitations, etc.) please go to the ER immediately and tell them what happened (that you stopped taking a corticosteroid cold turkey, following long-term use).
The painful joints may have been caused by the sulfasalazine, but they were probably withdrawal symptoms from stopping the budesonide. Sulfasalazine is a prodrug, that is to say, it does not become active in the digestive system until it is broken down by bacteria in the colon, into 5-aminosalicylic acid, (5-ASA), and sulfapyridine. While sulfapyradine has a therapeutic effect for rheumatoid arthritis, no beneficial effect from sulfapyradine has been observed for treating inflammatory bowel disease, and many people react adversely to it. In addition, many of us are sensitive to sulfa drugs, so sulfasalazine is almost never a good choice for treating MC.
Here are the most common side effects of improperly discontinuing the long-term use of a corticosteroid:
joint pain
muscle pain
fatigue
headache
fever
low blood pressure
nausea and vomiting
But the most serious risk of the abrupt discontinuation of long-term corticosteroid treatment is what is known as an adrenal crisis, in which case those symptoms can reach life-threatening proportions.
We can discuss getting your life back from MC a little later. But first, you may need to avert an adrenal crisis. The fatigue, nausea, and muscle and joint pain, that you have been experiencing are clearly signs of adrenal issues. If you are already feeling better, it's even possible that you are already overcoming it, but it's difficult for me to believe that it would resolve that quickly. Just in case the worst is yet to come, please see a doctor who is qualified to treat a patient experiencing an adrenal crisis. She or he can supplement your cortisol to reduce your symptoms while your adrenals are "learning" to produce cortisol again.
Good luck with this. Unless those symptoms have already pretty much resolved, please seek immediate qualified help, and when you are feeling better, we'll talk about strategies for resolving your MC symptoms.
Tex
Welcome to our internet family. I'm sorry that you have been dealing with this disease for so many years without remission. Unfortunately, the longer we remain without effective treatment, the more damage that accrues to our intestines, and the longer it can take (and the more difficult it usually becomes) to achieve full remission. In a nutshell, here's a quick overview of what we are dealing with:
First of all, there are only a handful of GI specialists in this country who truly understand how to treat the disease, and that is by far the biggest obstacle to treating the disease successfully, because it's not easy to accept the realization that the advice we receive from our doctor (especially a specialist) is just plain wrong. For example, many/most GI specialists still insist that diet has nothing to do with this disease, but slowly, more and more of them are beginning to realize that diet in fact plays a major role. Most of the drugs that they prescribe to treat the disease don't even address the inflammation that causes MC/CC/LC (since all forms of the disease have the same clinical symptoms and respond to the same treatment, we usually just refer to all of them as MC on this board).
The anti-inflammatories that are prescribed to treat the disease can mask the symptoms (by suppressing the inflammation) for many/most patients; however, they cannot prevent new inflammation from developing. That means that soon after the medications are discontinued, the clinical symptoms will return. But as you have discovered, alone, those drugs don't stop the symptoms for many of us. For many of us, it takes more than just medications — we have to stop the inflammation from being propagated in the first place.
Here, we do that by following a very strict diet that avoids all of our food sensitivities, and for the most severe cases, an effective medication may also be necessary.
But first things first. If you have been taking a full dose of budesonide for at least a year or more, stopping cold turkey is definitely very, very risky, because your adrenals may not be able to resume producing cortisol soon enough to prevent a major crash of various normal body functions. Your doctor made a very serious mistake. You need to consult with an adrenal expert ASAP, before all the budesonide is eliminated from your body (it can take a few weeks for it to be completely purged). This is extremely important. Please don't put it off. I would assume that this would fall under the domain of endocrinology, but if you can't see an endocrinologist promptly, an experienced internist should understand the problem. If you start feeling really sick (erratic blood pressure, heart palpitations, etc.) please go to the ER immediately and tell them what happened (that you stopped taking a corticosteroid cold turkey, following long-term use).
The painful joints may have been caused by the sulfasalazine, but they were probably withdrawal symptoms from stopping the budesonide. Sulfasalazine is a prodrug, that is to say, it does not become active in the digestive system until it is broken down by bacteria in the colon, into 5-aminosalicylic acid, (5-ASA), and sulfapyridine. While sulfapyradine has a therapeutic effect for rheumatoid arthritis, no beneficial effect from sulfapyradine has been observed for treating inflammatory bowel disease, and many people react adversely to it. In addition, many of us are sensitive to sulfa drugs, so sulfasalazine is almost never a good choice for treating MC.
Here are the most common side effects of improperly discontinuing the long-term use of a corticosteroid:
joint pain
muscle pain
fatigue
headache
fever
low blood pressure
nausea and vomiting
But the most serious risk of the abrupt discontinuation of long-term corticosteroid treatment is what is known as an adrenal crisis, in which case those symptoms can reach life-threatening proportions.
We can discuss getting your life back from MC a little later. But first, you may need to avert an adrenal crisis. The fatigue, nausea, and muscle and joint pain, that you have been experiencing are clearly signs of adrenal issues. If you are already feeling better, it's even possible that you are already overcoming it, but it's difficult for me to believe that it would resolve that quickly. Just in case the worst is yet to come, please see a doctor who is qualified to treat a patient experiencing an adrenal crisis. She or he can supplement your cortisol to reduce your symptoms while your adrenals are "learning" to produce cortisol again.
Good luck with this. Unless those symptoms have already pretty much resolved, please seek immediate qualified help, and when you are feeling better, we'll talk about strategies for resolving your MC symptoms.
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.
Okay then. I was pretty upset when I read your post, Tex. You sound very knowledgeable about this illness and medications. I really know nothing, but feel that I am a lot more informed. I did call an advice nurse after I read your post, which was last Sunday night, and she looked up budesonide and said the same thing, that it should not be discontinued abruptly, and that if my symptoms got worse, to go to the ER, and to otherwise see my doctor in the morning. I did get in to see the doc Monday morning. I told her my concerns, and she basically said budesonide was not really systemic (as prednisone), and that she didn't feel my symptoms were withdrawal from that, rather that they were probably caused by side effects from the sulfazine. I did ask for blood tests, and she did do a CBC and chem panel, both of which are normal. If I exhibited any of the other side effect symptoms mentioned above, and others I read about, I definitely would have gone straight to the hospital! My blood pressure has actually been a little higher than normal. I have a cuff at home and have been monitoring it. Really, the only symptom I am dealing with is the joint pain along with some muscle pain. No nausea, vomiting, low blood pressure, etc.
I did have an appt. at my GI's office and saw the PA as my GI doc is out on maternity leave. He didn't really ask a lot of questions (this was before I found this forum), and I didn't know what to ask. But, he prescribed cholestyramine to help with the constant diarrhea and said there was a new drug out I could try if that didn't help. I don't remember the name of it. The cholestyramine doesn't really help. Everyone warned me about constipation, but I certainly don't have that issue on it. I'm starting to take plain psyllium and take Lomotil.
So, what I would like to know now is, has anyone experienced the joint and muscle pain from stopping budesonide, and if so, how long does it take to resolve?? How do you figure out what is bothering your gut, food-wise? I stopped gluten and soy along with some other foods and didn't see an improvement.
I'd appreciate any feedback about this. I really appreciate all your information, Tex. I've been off the budesonide for over 2 weeks now and will continue to keep a check on symptoms as you said it could take that long for the drug to be completely out of my system.
Thanks!
I did have an appt. at my GI's office and saw the PA as my GI doc is out on maternity leave. He didn't really ask a lot of questions (this was before I found this forum), and I didn't know what to ask. But, he prescribed cholestyramine to help with the constant diarrhea and said there was a new drug out I could try if that didn't help. I don't remember the name of it. The cholestyramine doesn't really help. Everyone warned me about constipation, but I certainly don't have that issue on it. I'm starting to take plain psyllium and take Lomotil.
So, what I would like to know now is, has anyone experienced the joint and muscle pain from stopping budesonide, and if so, how long does it take to resolve?? How do you figure out what is bothering your gut, food-wise? I stopped gluten and soy along with some other foods and didn't see an improvement.
I'd appreciate any feedback about this. I really appreciate all your information, Tex. I've been off the budesonide for over 2 weeks now and will continue to keep a check on symptoms as you said it could take that long for the drug to be completely out of my system.
Thanks!
Everyone doesn't have the same side effects from drugs, nor the same withdrawal symptoms in the case of corticosteroids. Apparently you've been very lucky, and hopefully you're out of the woods by now. Please remain alert to symptoms though, just in case something still develops.
The doctor who told you that budesonide is not systemic is wrong. True, less than 20 % of it enters the bloodstream, according to research trials, so it takes budesonide much longer than prednisone to cause systemic issues. But if a patient takes it long enough (6 months to a year), the systemic level can slowly build up until it becomes a serious problem, if withdrawal is not properly done.
A standard CBC is of little value for monitoring a corticosteroid withdrawal problem. Adrenal function (cortisol levels) are the issue.
One of our members in Belgium was told by her doctor to stop taking budesonide cold turkey last fall. You can read about her ordeal at the following link. It's a long thread (5 pages), but it offers some insight into the risks of stopping budesonide abruptly. It took Julie roughly 5 months to get back to almost normal.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17274
Tex
The doctor who told you that budesonide is not systemic is wrong. True, less than 20 % of it enters the bloodstream, according to research trials, so it takes budesonide much longer than prednisone to cause systemic issues. But if a patient takes it long enough (6 months to a year), the systemic level can slowly build up until it becomes a serious problem, if withdrawal is not properly done.
A standard CBC is of little value for monitoring a corticosteroid withdrawal problem. Adrenal function (cortisol levels) are the issue.
One of our members in Belgium was told by her doctor to stop taking budesonide cold turkey last fall. You can read about her ordeal at the following link. It's a long thread (5 pages), but it offers some insight into the risks of stopping budesonide abruptly. It took Julie roughly 5 months to get back to almost normal.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17274
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. I hope you understand I wasn't upset at YOU! I was upset because I knew so little about all this and apparently my doctor does not know as well. I realized the serious potential of withdrawing from this drug, and that I could possibly become very ill, even die, from those effects. I'm grateful for your help and information. As you said, hopefully nothing else will happen, and hopefully I will recover from the joint and muscle pain soon.
I did read the posts you directed me to. Really scary! I hope she is fully recovered.
I'm so grateful I have this site to refer to for information and support. Thanks for your help!
I did read the posts you directed me to. Really scary! I hope she is fully recovered.
I'm so grateful I have this site to refer to for information and support. Thanks for your help!
Luanne,
To be honest, I wouldn't have been surprised if you had been upset with me after I posted that information, because there are few things more aggravating than to have someone trying to scare someone else unnecessarily. That's never helpful. But when the risk of a truly serious reaction is not only possible, but statistically likely, I just can't force myself to look the other way and ignore it. Because if something bad actually happened, and I had been aware of the risk but kept it to myself, I wouldn't be able to face myself in the mirror after that.
It's not surprising that your PCP would side with the specialist (in some situations it can be career suicide to do otherwise) in denying the risks of improperly discontinuing a corticosteroid treatment. I'm not sure if it's part of their professional training, but virtually all doctors have an automatic default response that denies the risks of adverse reactions to drugs, especially to drugs that they (or their colleagues) prescribe. I'm not sure if it's denial ("That can't happen to my patients, because the odds are against it"), or if it's an attempt to discourage liability suits, but I've never encountered a doctor who would honestly and openly admit that any medication (whether they prescribed it or not) did indeed cause an adverse reaction that I experienced. I'm guessing that their legal council advises them to follow that policy.
I've had minor adverse reactions to medications, and I've had at least one reaction that came very close to doing me in, but not a single doctor (out of many who were involved), would admit that my issues could have been caused by an adverse drug reaction (even though the evidence was very clear, as far as I could tell). It's almost as if they worship drugs, and they're afraid to do anything to discredit them.
At this point, the odds are improving that most of the risk may be behind you. The only fly in the ointment is that we don't know how much time elapsed between the point at which Julie discontinued taking budesonide, and the point at which her clinical symptoms due to a cortisol crash became obvious. Do you know if your doctor checked your cortisol levels when she ordered the blood tests? Of course cortisol levels fluctuate all day long, and from day to day, but if your cortisol level was/is in the normal range, then you should be home free.
I apologize for possibly scaring you unnecessarily, but I would rather apologize for that, than to have to apologize for failing to point out a risk that turned out to have very serious and regrettable consequences.
And of course, you're very welcome.
Tex
To be honest, I wouldn't have been surprised if you had been upset with me after I posted that information, because there are few things more aggravating than to have someone trying to scare someone else unnecessarily. That's never helpful. But when the risk of a truly serious reaction is not only possible, but statistically likely, I just can't force myself to look the other way and ignore it. Because if something bad actually happened, and I had been aware of the risk but kept it to myself, I wouldn't be able to face myself in the mirror after that.
It's not surprising that your PCP would side with the specialist (in some situations it can be career suicide to do otherwise) in denying the risks of improperly discontinuing a corticosteroid treatment. I'm not sure if it's part of their professional training, but virtually all doctors have an automatic default response that denies the risks of adverse reactions to drugs, especially to drugs that they (or their colleagues) prescribe. I'm not sure if it's denial ("That can't happen to my patients, because the odds are against it"), or if it's an attempt to discourage liability suits, but I've never encountered a doctor who would honestly and openly admit that any medication (whether they prescribed it or not) did indeed cause an adverse reaction that I experienced. I'm guessing that their legal council advises them to follow that policy.
I've had minor adverse reactions to medications, and I've had at least one reaction that came very close to doing me in, but not a single doctor (out of many who were involved), would admit that my issues could have been caused by an adverse drug reaction (even though the evidence was very clear, as far as I could tell). It's almost as if they worship drugs, and they're afraid to do anything to discredit them.
At this point, the odds are improving that most of the risk may be behind you. The only fly in the ointment is that we don't know how much time elapsed between the point at which Julie discontinued taking budesonide, and the point at which her clinical symptoms due to a cortisol crash became obvious. Do you know if your doctor checked your cortisol levels when she ordered the blood tests? Of course cortisol levels fluctuate all day long, and from day to day, but if your cortisol level was/is in the normal range, then you should be home free.
I apologize for possibly scaring you unnecessarily, but I would rather apologize for that, than to have to apologize for failing to point out a risk that turned out to have very serious and regrettable consequences.
And of course, you're very 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.
Welcome Luanne. I hope you find the answers you need here. Tex is a wealth of information and you may want to order his book. Just click on the picture in the upper right hand corner of this page to take you to Amazon.
You didn't mention if Budesonide helped with your symptoms. Like tex said, it will mask symptoms, but if you continue to either eat something that you are intolerant to take a drug that perpetuates your symptoms, the Entocort will only do so much. I was on it for six months, but only at full dosage for about a month. The weaning process is slow. I have been off of it for over a year now. The diet was key. I took out almost everything I thought could cause inflammation... gluten, dairy, soy. then I also stopped eating all the "aggravators" like RAW FRUITS AND VEGIES, acid food like tomato products, caffeine, beans and legumes, night shades ( white potato, peppers, eggplant), most supplements, and probiotics, and most sugar. What was left? Meats, eggs ( some can't eat these), rice and it's products, corn tortillas and GF cereal, almond butter and almond milk, sweet potato, apple sauce....
I stayed on this diet the whole time I was on Budsonide and was able to taper off. Then I was able to test and add things back in in from the "aggravator" category.It's a process, but so worth it.
If you have the money, you can send a stool sample to a lab called Enterolab to see what you are intolerant to. That will save you a lot of detective work. Google them. Some of us find out that we can't have certain other grains and certain meats or nuts.
When you said you saw no improvement from the diet, it may be because you have had MC for a long time and it takes a long time to heal. You just may not have done it for long enough. I think I am still healing and it's been almost 2 years since I started on this journey.
Again, there are many drugs that can keep you from getting better ( anti depression for example) so you should look at that.
Good luck and keep us posted
Leah
You didn't mention if Budesonide helped with your symptoms. Like tex said, it will mask symptoms, but if you continue to either eat something that you are intolerant to take a drug that perpetuates your symptoms, the Entocort will only do so much. I was on it for six months, but only at full dosage for about a month. The weaning process is slow. I have been off of it for over a year now. The diet was key. I took out almost everything I thought could cause inflammation... gluten, dairy, soy. then I also stopped eating all the "aggravators" like RAW FRUITS AND VEGIES, acid food like tomato products, caffeine, beans and legumes, night shades ( white potato, peppers, eggplant), most supplements, and probiotics, and most sugar. What was left? Meats, eggs ( some can't eat these), rice and it's products, corn tortillas and GF cereal, almond butter and almond milk, sweet potato, apple sauce....
I stayed on this diet the whole time I was on Budsonide and was able to taper off. Then I was able to test and add things back in in from the "aggravator" category.It's a process, but so worth it.
If you have the money, you can send a stool sample to a lab called Enterolab to see what you are intolerant to. That will save you a lot of detective work. Google them. Some of us find out that we can't have certain other grains and certain meats or nuts.
When you said you saw no improvement from the diet, it may be because you have had MC for a long time and it takes a long time to heal. You just may not have done it for long enough. I think I am still healing and it's been almost 2 years since I started on this journey.
Again, there are many drugs that can keep you from getting better ( anti depression for example) so you should look at that.
Good luck and keep us posted
Leah