Hi everyone,
Yes, it's quite amazing how little anyone knows about all of this. In fact, I'm amazed at how little my GP knows in general. For instance, she didn't know that SSRIs interact with some of the newer migraine medications, such as Imitrex. I was amazed. If I hadn't told her, she would have prescribed it for me, and I could have had a major problem as a result. You really have to be your own doctor around here. Geez.
Based on Polly's post, I think I'm going to taper off the entocort since it doesn't seem to be helping and go back on the ten-day course of prednisone. Then I'll add the entocort back in. I just need to get the inflammation under control until I can see a doctor or SOMEONE who can help me. Also, I read that some women's cycles can make MC worse, and my cycle, I think because I've lost quite a bit of weight in a short amount of time, is off, which may a partial explanation for why the D is worse right now. Last night I felt like I had a pot of boiling potatoes going in my gut. And I really hadn't eaten anything to contribute to such a reaction.
Anyway, hope you all have had a good weekend. I'm heading into an evening of teaching.
Best,
Beth
Thinking about going back on prednisone
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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bobh
- Gentoo Penguin
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- Location: California, San Luis Obispo (coast)
I think your plan is a winner. I had the same symptoms you are describing when my flare was raging, and it was quickly under control doing the protocol you described.
Like Polly said, Prednisone is frequently used, for a variety of reasons. My MD said he almost took it when he had a bad case of Poison Oak rash on his skin, and had prescribed it for others with Poison Oak / Poison Ivy. Also asthma, etc. It gets in there and halts the inflammatory process.
Like Polly said, Prednisone is frequently used, for a variety of reasons. My MD said he almost took it when he had a bad case of Poison Oak rash on his skin, and had prescribed it for others with Poison Oak / Poison Ivy. Also asthma, etc. It gets in there and halts the inflammatory process.
I predict that your troubles will be over when the inflammation is under control. Talking to Dr's after that milestone will be to their befefit, to educate them.Beth wrote:...Then I'll add the entocort back in. I just need to get the inflammation under control until I can see a doctor or SOMEONE who can help me.
Bob H
Any suggestions, (or anyone else), for how slowly I should taper off the entocort? I'm at 9 mg right now? So tomorrow I'll start taking 6. For how many days should I stay at 6 and then decrease to 3?
Thanks,
Beth
P.S. I did the prednisone at the end of December, but I guess the inflammation was too bad to get under control in one run of the ten-day course. Does that make sense to anyone?
Thanks,
Beth
P.S. I did the prednisone at the end of December, but I guess the inflammation was too bad to get under control in one run of the ten-day course. Does that make sense to anyone?
Beth,
Did you use the same prednisone protocol as Bob the last time? What did your GP prescribe for this time?
Usually it is recommended that Entocort be tapered over a period of 2-4 weeks. And, of course, it is always recommended it should be done with monitoring from a doc. That old catch 22 again!
Polly
Did you use the same prednisone protocol as Bob the last time? What did your GP prescribe for this time?
Usually it is recommended that Entocort be tapered over a period of 2-4 weeks. And, of course, it is always recommended it should be done with monitoring from a doc. That old catch 22 again!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Yes, I used the same protocol as last time. And I definitely wasn't monitored by a doctor. I told her what I wanted to do, and she said, okay (reluctantly), and then I was on my own. I just talked to her on Friday and told her I wanted to be on prednisone again, and she said okay again. Same protocol. But she really doesn't know anything about MC and didn't question my being on the entocort at the same time as the pred. So, from your perspective, Polly or anyone else, do you think I should taper off the entocort? Or do you think I should try increasing the entocort first? And by how much should I try increasing the entocort? I'm trying to get into see a GI, but it's a really long wait - at least until April unless someone cancels and I can get in on the waiting list. Oy vey, as my MIL would say.
Beth
Yes, I used the same protocol as last time. And I definitely wasn't monitored by a doctor. I told her what I wanted to do, and she said, okay (reluctantly), and then I was on my own. I just talked to her on Friday and told her I wanted to be on prednisone again, and she said okay again. Same protocol. But she really doesn't know anything about MC and didn't question my being on the entocort at the same time as the pred. So, from your perspective, Polly or anyone else, do you think I should taper off the entocort? Or do you think I should try increasing the entocort first? And by how much should I try increasing the entocort? I'm trying to get into see a GI, but it's a really long wait - at least until April unless someone cancels and I can get in on the waiting list. Oy vey, as my MIL would say.
Beth
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bobh
- Gentoo Penguin
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- Location: California, San Luis Obispo (coast)
Beth wrote:... I did the prednisone at the end of December, but I guess the inflammation was too bad to get under control in one run of the ten-day course. Does that make sense to anyone?
Beth, I find it helpful to keep a journal. It all "becomes a blur" if you don't scribble down a quick note of how things went that day, what you ate, how you reacted to meds, etc.
Here's a post you did about a month ago, on January 2nd:
Right now you feel terrible. It's hard to remember feeling better - but I think a lot of your inflammation did get better at the time. And I am confident it will get better this time too - there really isn't a hell of a lot more out there right now that is going to knock out inflammation if these meds don't do it.Beth wrote:... I'm actually off the prednisone now - the ten day stint helped immensely, and while I wouldn't say I'm back to normal yet, I can actually eat and keep food in my body. I keep slipping into the grand old C, so trying to deal with that. And I'm on the entocort now, taking 6 mg/day.
Some people (such as Granny) require 3 Entocort a day to maintain a remission, and I am borderline between 2 and 3. You are currently at 3 a day, but after your last run of Prednisone you were at 2 (of the 3 mg pills). And with constipation going on, you went down to 1 pill a day at some point. In hindsight, that wasn't keeping the inflammation under control. I am confident it will go better for you this time - especially if you have something to control a possible constipation issue (not my specialty...)
At this point you have sort of a "waiting game" as you taper off the Entocort. I would research if ANYONE has ever reported Entocort as a possible culprit for constipation. Per data to hand, it is an anti-inflammatory, not directly a "motility killer" (cork - immodium).
I don't know where you would go to research that - google it or whatever. Call a tech rep at the drug company... Something. Then you will have confidence it how to respond to conditions. If you find that Entocort has NOTHING to do with constipation, you'd feel better about maintaining your normal dose during constipation (and take 1/2 the Milk of Magnesia that was used last time, etc.)
Bob H
Here is a list of the possible side effects of budesonide. As you can see, constipation is on that list, (along with just about every other malady known to medical science - except for diarrhea). I suspect that C is a pretty rare event, however, as side effects go.
Indigestion, muscle cramps, shaking, fast or fluttering heartbeat, nervousness, blurred vision, rash, itching, irregular periods or no periods at all, bloating, thrush, muscle wasting of the upper arms and legs, feeling tired, weakness, constipation, weight gain, hair growth, increased appetite, euphoria (feeling high), depression, problems sleeping, eye infections, thinning of the skin, bruising, stretch marks, patches of red skin, acne, swollen ankles, nausea (feeling sick), malaise (general feeling of being unwell) or hiccups.
This list is from:
http://www.patient.co.uk/showdoc/30003880/
Note that CC is successfully treated with budesonide, regardless of whether CC presents with diarrhea, or constipation, as this article in GUT magazine attests:
http://gut.bmj.com/cgi/content/full/52/8/1230
Withdrawal from treatment with a corticosteroid can be greatly influenced by the length of time that treatment has been in place. Even treatment with Prednisone can be halted abruptly, if the treatment has only been going on for only a week or two. After six or eight weeks, though, a full withdrawal regime is usually required. I would assume that treatment durations in between these limits would require linearly proportional withdrawal periods.
As you probably know, the reason for regulated withdrawal is because certain body functions are taken over by the corticosteroids, and the body eventually becomes rather complacent, and "forgets" how to do certain things. Therefore, a regulated withdrawal is necessary, to insure that the body resumes normal functions, such as the production of cortisol, etc.
So how long have you been taking Entocort?
Wayne
Indigestion, muscle cramps, shaking, fast or fluttering heartbeat, nervousness, blurred vision, rash, itching, irregular periods or no periods at all, bloating, thrush, muscle wasting of the upper arms and legs, feeling tired, weakness, constipation, weight gain, hair growth, increased appetite, euphoria (feeling high), depression, problems sleeping, eye infections, thinning of the skin, bruising, stretch marks, patches of red skin, acne, swollen ankles, nausea (feeling sick), malaise (general feeling of being unwell) or hiccups.
This list is from:
http://www.patient.co.uk/showdoc/30003880/
Note that CC is successfully treated with budesonide, regardless of whether CC presents with diarrhea, or constipation, as this article in GUT magazine attests:
http://gut.bmj.com/cgi/content/full/52/8/1230
Withdrawal from treatment with a corticosteroid can be greatly influenced by the length of time that treatment has been in place. Even treatment with Prednisone can be halted abruptly, if the treatment has only been going on for only a week or two. After six or eight weeks, though, a full withdrawal regime is usually required. I would assume that treatment durations in between these limits would require linearly proportional withdrawal periods.
As you probably know, the reason for regulated withdrawal is because certain body functions are taken over by the corticosteroids, and the body eventually becomes rather complacent, and "forgets" how to do certain things. Therefore, a regulated withdrawal is necessary, to insure that the body resumes normal functions, such as the production of cortisol, etc.
So how long have you been taking Entocort?
Wayne
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harvest_table
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- Location: Fergus Falls, Minnesota
Hi Beth,
Sorry to chime in late, but I was thinking if your going to try pred again perhaps you might consider a longer stint than just 10 days?
The pred, then entocort/diet treatment path I took worked really well for me, no problems using either medication (some bruising with pred) or weaning off them however, I did not take them at the same time so have no experience with that.
I took an 8 week round of pred which almost instantly brought me back to living symptom free after well over a year of chronic D, muscle joint pain and all that fun stuff. I don't remember exactly how I weaned off of pred but I remember it was slowly- tapered my dosing the last month.
Shortly after stopping pred my symptoms started slowly returning and it was at that time I started entocort and dieting. I took entocort 3/day for 6 months and weaned off it very slowly, with no problems.
Was your DX LC or CC and how long ago were you DX? I seem to recall that you were able to live symptom free for a few years but you thought maybe adding gluten back into your diet brought you back to these problems?
Are you taking any other medications or supplements at this time?
Hang in there. There is light at the end of this tunnel, for sure. Diet has been carrying me alone now for 2 years- but the jump start with medications did the trick at the onset.
Love,
Joanna
Sorry to chime in late, but I was thinking if your going to try pred again perhaps you might consider a longer stint than just 10 days?
The pred, then entocort/diet treatment path I took worked really well for me, no problems using either medication (some bruising with pred) or weaning off them however, I did not take them at the same time so have no experience with that.
I took an 8 week round of pred which almost instantly brought me back to living symptom free after well over a year of chronic D, muscle joint pain and all that fun stuff. I don't remember exactly how I weaned off of pred but I remember it was slowly- tapered my dosing the last month.
Shortly after stopping pred my symptoms started slowly returning and it was at that time I started entocort and dieting. I took entocort 3/day for 6 months and weaned off it very slowly, with no problems.
Was your DX LC or CC and how long ago were you DX? I seem to recall that you were able to live symptom free for a few years but you thought maybe adding gluten back into your diet brought you back to these problems?
Are you taking any other medications or supplements at this time?
Hang in there. There is light at the end of this tunnel, for sure. Diet has been carrying me alone now for 2 years- but the jump start with medications did the trick at the onset.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Beth,
In this study, bedesonide was only 13% less effective than the more potent corticosteroids, for treating Crohn's.
http://cat.inist.fr/?aModele=afficheN&cpsidt=13837002
Wayne
P S If you've only been on Entocort for roughly five weeks, I would think that you could phase it out in about two weeks, or somewhere thereabouts. Considering that you already have D, and regular pain, allowing it to become progressively worse, over the course of a month, is going to seem like an eternity. What is the starting daily Prednisone dose in your treatment plan - 60 mg or 40 mg?
In this study, bedesonide was only 13% less effective than the more potent corticosteroids, for treating Crohn's.
http://cat.inist.fr/?aModele=afficheN&cpsidt=13837002
Wayne
P S If you've only been on Entocort for roughly five weeks, I would think that you could phase it out in about two weeks, or somewhere thereabouts. Considering that you already have D, and regular pain, allowing it to become progressively worse, over the course of a month, is going to seem like an eternity. What is the starting daily Prednisone dose in your treatment plan - 60 mg or 40 mg?
Wow, did I have a bad night. I ate a lot of bananas yesterday, and I woke up in the middle of the night with the worst cramps. Same thing this morning. I guess bananas (and their sulfites) are out for awhile. Man, my diet just keeps shrinking - and so do I!
Okay, let me see if I can answer all of your questions. I was dx'd with LC 3 years ago (I think), and, yep, I'm pretty sure that being lax about the GF diet brought back the LC with a vengeance this past fall. The plan, Polly, (my plan, that is - no doctor has been helping me with this) was to start on 60 mg of pred and taper down for ten days. I like your idea, Joanna, of going on the pred for a longer (but still short-term) period. I don't dare do that, though, without the supervision of a doctor who really knows what she's doing. Right now I'm taking an SSRI, the occasional klonapin (1 mg) for sleeping, and about a million different supplements to help with the adrenal fatigue. (Multivitamin, fish oil, vitamin D, 5HTP, melatonin, kavinace, licorice root.) And I'm eating the same thing every day: eggs and avocado in the morning (was eating bananas but no more); for lunch and dinner, white fish and a mixture of the following: potatoes, carrots, zucchini, spinach, a little flax seed oil . Also a few cups of black tea with honey. Sometimes a steak. Other than that, zip, zero, nada - and still having very bad D and terrible cramping.
Bob - you're right, I was feeling better after the pred in early January, but it lasted a VERY short time. After that I was dealing with C, and then, since I've been back from my graduate residency in the middle of January, it's been straight D. Haven't seen Norman in months. I'm really at a loss to know what to do. I guess I'll try tapering off the entocort for two weeks and then adding in the pred. Then I'll return to the entocort again. I just hope I don't get significantly worse as I taper.
Does anyone think that the reason the first round of pred didn't stick is because I went down too low too quickly on the entocort?
Thanks so much for all of your support during this frustrating time. I can't wait to feel better - and I know I will eventually!
Beth
Okay, let me see if I can answer all of your questions. I was dx'd with LC 3 years ago (I think), and, yep, I'm pretty sure that being lax about the GF diet brought back the LC with a vengeance this past fall. The plan, Polly, (my plan, that is - no doctor has been helping me with this) was to start on 60 mg of pred and taper down for ten days. I like your idea, Joanna, of going on the pred for a longer (but still short-term) period. I don't dare do that, though, without the supervision of a doctor who really knows what she's doing. Right now I'm taking an SSRI, the occasional klonapin (1 mg) for sleeping, and about a million different supplements to help with the adrenal fatigue. (Multivitamin, fish oil, vitamin D, 5HTP, melatonin, kavinace, licorice root.) And I'm eating the same thing every day: eggs and avocado in the morning (was eating bananas but no more); for lunch and dinner, white fish and a mixture of the following: potatoes, carrots, zucchini, spinach, a little flax seed oil . Also a few cups of black tea with honey. Sometimes a steak. Other than that, zip, zero, nada - and still having very bad D and terrible cramping.
Bob - you're right, I was feeling better after the pred in early January, but it lasted a VERY short time. After that I was dealing with C, and then, since I've been back from my graduate residency in the middle of January, it's been straight D. Haven't seen Norman in months. I'm really at a loss to know what to do. I guess I'll try tapering off the entocort for two weeks and then adding in the pred. Then I'll return to the entocort again. I just hope I don't get significantly worse as I taper.
Does anyone think that the reason the first round of pred didn't stick is because I went down too low too quickly on the entocort?
Thanks so much for all of your support during this frustrating time. I can't wait to feel better - and I know I will eventually!
Beth
Hi Beth,
I hesitate to give advise as my dx of LC is shaky....but I'll tell you my story and let you decide. I never tried corticosteriods, but was on entocort two different times. The first was in Feb. 2006 for 10 weeks and the second was in Aug 2006 for 4 1/2 months and it didn't work either time for me. In Nov. 2006 I started using a product called Pancreatin and by Dec. 2006 was dramatically better. I started using this product after speaking with Leo Galland about my symptoms...I think you mentioned his research in a post. He said that when you have a leaky gut that sometimes the pancreas is not functioning at its best and if you are not digesting food properly it will be difficult to heal. In addition to the digestve enzymes, the filler in this digestive enzyme supplement is calcium carbonate which Marsha has found to be effective when she is having D.
I do actively see a GI and he doesn't believe this product could possibly help...but the important thing is he said that it will absolutely not hurt me to take them. I am very good about keeping a journal and I know it helps me and with a GI telling me there are no risks in his opinion in taking them...I'll continue to take them until I no longer need them. In addition to relieving the D, I also feel much better...far less sick.
I'm really sorry you are going through such a hard time. BTW, bananas are a killer for me too. I am sure you will eventually find a way back to good health.
Love,
Cristi
Pancreatin is made by Nature's Life and 250 tablet bottle is under 20 dollars.
I hesitate to give advise as my dx of LC is shaky....but I'll tell you my story and let you decide. I never tried corticosteriods, but was on entocort two different times. The first was in Feb. 2006 for 10 weeks and the second was in Aug 2006 for 4 1/2 months and it didn't work either time for me. In Nov. 2006 I started using a product called Pancreatin and by Dec. 2006 was dramatically better. I started using this product after speaking with Leo Galland about my symptoms...I think you mentioned his research in a post. He said that when you have a leaky gut that sometimes the pancreas is not functioning at its best and if you are not digesting food properly it will be difficult to heal. In addition to the digestve enzymes, the filler in this digestive enzyme supplement is calcium carbonate which Marsha has found to be effective when she is having D.
I do actively see a GI and he doesn't believe this product could possibly help...but the important thing is he said that it will absolutely not hurt me to take them. I am very good about keeping a journal and I know it helps me and with a GI telling me there are no risks in his opinion in taking them...I'll continue to take them until I no longer need them. In addition to relieving the D, I also feel much better...far less sick.
I'm really sorry you are going through such a hard time. BTW, bananas are a killer for me too. I am sure you will eventually find a way back to good health.
Love,
Cristi
Pancreatin is made by Nature's Life and 250 tablet bottle is under 20 dollars.
Yes, that's what I think. I also think your C had more to do with your diet than with the Entocort. Please remember, though, that there are more knowledable people here than I, and I'm certainly no doctor.Beth wrote:Does anyone think that the reason the first round of pred didn't stick is because I went down too low too quickly on the entocort?
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Shirley - I actually don't think the C had anything to do with my diet. I was eating a ton of fruit and veggies and buckwheat (good source of fiber) when I was struggling with C a month ago. It's a mystery to me.
Cristi - thank you so much for sharing your story. I'll look into the pancreatin for sure.
I decided to up the entocort today, everybody. The food is going through my body so quickly I am sure I'm absorbing almost no nutrients. Scary. I had to cancel my students today because the D was so bad this morning. Sorry to be graphic, but while I was running to the bathroom at 4 am, I could smell the fish I had eaten for dinner. Then, this morning, I could literally see in the toilet the rest of what I'd eaten for dinner. My body emptied out so completely it left me feeling unbelievably drained. Have lots of calls into various people to see if I can get in to see a GI asap. I just need to be under the care of someone who knows at least something about MC since my doctor is so totally unreliable.
Beth
Cristi - thank you so much for sharing your story. I'll look into the pancreatin for sure.
I decided to up the entocort today, everybody. The food is going through my body so quickly I am sure I'm absorbing almost no nutrients. Scary. I had to cancel my students today because the D was so bad this morning. Sorry to be graphic, but while I was running to the bathroom at 4 am, I could smell the fish I had eaten for dinner. Then, this morning, I could literally see in the toilet the rest of what I'd eaten for dinner. My body emptied out so completely it left me feeling unbelievably drained. Have lots of calls into various people to see if I can get in to see a GI asap. I just need to be under the care of someone who knows at least something about MC since my doctor is so totally unreliable.
Beth
Beth,
Ditto on what Shirley said. I think that if you're going to take a med, you need to follow the program, in order to give it a fair chance to work. That means that more may not be better, and by the same token, less may not be better, either.
I also agree with Cristi about the bananas. Before I completely healed, they would make me sick. Even today, I can, (and usually do), eat one or two a day, without any problems, but if I eat three or four, I feel uncomfortable, sorta similar to mild C. You may just be eating too many of them. I believe I read somewhere that they are hard to digest.
Wayne
Ditto on what Shirley said. I think that if you're going to take a med, you need to follow the program, in order to give it a fair chance to work. That means that more may not be better, and by the same token, less may not be better, either.
I also agree with Cristi about the bananas. Before I completely healed, they would make me sick. Even today, I can, (and usually do), eat one or two a day, without any problems, but if I eat three or four, I feel uncomfortable, sorta similar to mild C. You may just be eating too many of them. I believe I read somewhere that they are hard to digest.
Wayne
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.