I read an older post about someone who received relatively high doses of prednisone for a week, then the Entocort was started. Seems like a good idea, especially for those who have had this problem for quite some time (me). Reminds me of the salvage chemotherapy my wife experienced when her disease was refractory. Same approach, and in both cases, dealing with an autoimmune problem.
Am 5 days into Entocort and am thinking by this weekend, if nothing changes, to see if my Doc will prescribe this for me?
Any opinions???? Need the advice.
Rich
Hitting it hard with plain old Prednisone first
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
That prednisone treatment that you mentioned probably works for refractory cases because of the shock effect. Sometimes, the system can be "shocked" into remission by a drastic change. I've even heard of it working by someone who suddenly ate some gluten, (for the shock effect), though I can't recommend that treatment, as a general rule. 
Since you already have a base level of budesonide, (a corticosteroid), built up in your body, there are 3 possibilities, if you try a prednisone "shock treatment", at this point:
1. it might not work, because of the residual supply of budesonide already present, (IOW, your body is not going to be "surprised" by the additional corticosteroid dose)
2. it might work anyway, despite the residual budesonide
3. you might suffer from a life-threatening corticosteroid overdose, (this happened to one of our members, when her doctor prescribed prednisone for a back injury, knowing that she had already been taking Entocort. She made many trips to the ER, before that crisis was resolved, and now she has to take blood pressure and heart meds for the rest of her life, because of the damage caused by that incident.
IOW, if you are going to try that, I would suggest that you wait a couple of weeks for most of the budesonide to clear your body, before starting a prednisone treatment. In only five days, you shouldn't have accumulated a significant amount, because only about 10 to 15% of the budesonide in Entocort EC is absorbed into the bloodstream, so theoretically, it should be relatively safe. The problem is that we all react differently to drugs, and corticosteroids are not to be taken lightly - it can take weeks to get rid of an overdose, and all that time, it is damaging the body. I will predict that your GI doc will see nothing wrong with simply stopping the use of Entocort, and immediately beginning a prednisone treatment. That was exactly the attitude of the doctor who prescribed the prednisone in the case that I mentioned above. Some doctors don't appreciate the risks involved, while others seem to be deathly afraid of budesonide, depending on their experiences with corticosteroids, I suppose.
I do believe that the shock effect of a prednisone regimen, followed by Entocort EC can be very effective in bringing remission in long-time refractory cases. Just stay safe, by not taking chances, just in case you happen to be more sensitive to an adverse reaction, than the average individual.
I assume that you are seeing no improvement at all, (or only negative effects), right? Are you taking any other drugs? The reason I ask, is because Entocort EC is usually not able to overcome an adverse reaction to any other drugs, meaning that if you are reacting adversely to another drug, then the Entocort EC will not be able to provide any benefits - the drug causing a reaction will dominate.
Tex
Since you already have a base level of budesonide, (a corticosteroid), built up in your body, there are 3 possibilities, if you try a prednisone "shock treatment", at this point:
1. it might not work, because of the residual supply of budesonide already present, (IOW, your body is not going to be "surprised" by the additional corticosteroid dose)
2. it might work anyway, despite the residual budesonide
3. you might suffer from a life-threatening corticosteroid overdose, (this happened to one of our members, when her doctor prescribed prednisone for a back injury, knowing that she had already been taking Entocort. She made many trips to the ER, before that crisis was resolved, and now she has to take blood pressure and heart meds for the rest of her life, because of the damage caused by that incident.
IOW, if you are going to try that, I would suggest that you wait a couple of weeks for most of the budesonide to clear your body, before starting a prednisone treatment. In only five days, you shouldn't have accumulated a significant amount, because only about 10 to 15% of the budesonide in Entocort EC is absorbed into the bloodstream, so theoretically, it should be relatively safe. The problem is that we all react differently to drugs, and corticosteroids are not to be taken lightly - it can take weeks to get rid of an overdose, and all that time, it is damaging the body. I will predict that your GI doc will see nothing wrong with simply stopping the use of Entocort, and immediately beginning a prednisone treatment. That was exactly the attitude of the doctor who prescribed the prednisone in the case that I mentioned above. Some doctors don't appreciate the risks involved, while others seem to be deathly afraid of budesonide, depending on their experiences with corticosteroids, I suppose.
I do believe that the shock effect of a prednisone regimen, followed by Entocort EC can be very effective in bringing remission in long-time refractory cases. Just stay safe, by not taking chances, just in case you happen to be more sensitive to an adverse reaction, than the average individual.
I assume that you are seeing no improvement at all, (or only negative effects), right? Are you taking any other drugs? The reason I ask, is because Entocort EC is usually not able to overcome an adverse reaction to any other drugs, meaning that if you are reacting adversely to another drug, then the Entocort EC will not be able to provide any benefits - the drug causing a reaction will dominate.
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.
When JoAnn went into a flare this year, Entocort didn't work for her immediately, so her PCP put her on Prednisone for a week, as I recall. Then she went back on Entocort and it worked for her. I don't remember if she got Entocort out of her system before she began the Prednisone. I should mention that her first attempt at using Entocort was very effective. It wasn't until she had gone off of it completely and went on it again a second time that it didn't work so well.
Hopefully she'll read this thread and give her more accurate version of what transpired.
My GI wouldn't give me a boost using Prednisone when I told him Entocort wasn't doing the job anymore. I wasn't that anxious to be on it, so I didn't press it.
Gloria
Hopefully she'll read this thread and give her more accurate version of what transpired.
My GI wouldn't give me a boost using Prednisone when I told him Entocort wasn't doing the job anymore. I wasn't that anxious to be on it, so I didn't press it.
Gloria
You never know what you can do until you have to do it.
Gloria and Tex,
I am not taking any other drugs... except for imodium as needed. I did take one Bentyl today as well (for comfort/relief). I wouldn't think those drugs would interact negatively with Entocort.
My biggest issue I have with Entocort is what feels like a toxicity. This morning, I still had multiple loose BM's. The toxicity wanes as the day goes on.
Now at work this afternoon, I had a BM (never usually do at that time), and it was the most formed I have seen in a while. I almost felt constipated. There was blood but it was surface. Happens at times.
So I don't know if that was the result of the immodium AND the Bentyl or if, perhaps (fingers crossed), I am having a response from Entocort. I guess tomorrow morning will tell me for sure.
By the way, my heralding event was a severe case of food poisoning that both my wife and I experienced. Hers cleared in a few days. Mine sent me to the hospital on bowel rest for a week.
So my theory, for me, is that I am genetically pre-dispositioned (grandfather had UC) and that the food poisoning started the process of disease.
By the way, I saw much less green color today. Perhaps these are good signs. Can you all tell how impatient I am with this. Too many doctors, too much mis-management, for far too long.
Rich
I am not taking any other drugs... except for imodium as needed. I did take one Bentyl today as well (for comfort/relief). I wouldn't think those drugs would interact negatively with Entocort.
My biggest issue I have with Entocort is what feels like a toxicity. This morning, I still had multiple loose BM's. The toxicity wanes as the day goes on.
Now at work this afternoon, I had a BM (never usually do at that time), and it was the most formed I have seen in a while. I almost felt constipated. There was blood but it was surface. Happens at times.
So I don't know if that was the result of the immodium AND the Bentyl or if, perhaps (fingers crossed), I am having a response from Entocort. I guess tomorrow morning will tell me for sure.
By the way, my heralding event was a severe case of food poisoning that both my wife and I experienced. Hers cleared in a few days. Mine sent me to the hospital on bowel rest for a week.
So my theory, for me, is that I am genetically pre-dispositioned (grandfather had UC) and that the food poisoning started the process of disease.
By the way, I saw much less green color today. Perhaps these are good signs. Can you all tell how impatient I am with this. Too many doctors, too much mis-management, for far too long.
Rich
That's probably right on target.Rich wrote:So my theory, for me, is that I am genetically pre-dispositioned (grandfather had UC) and that the food poisoning started the process of disease.
One thought. You say you feel a "toxicity" with Entocort. Imodium causes vertigo, and an "off" feeling for me. Just half a pill is enough to make me slightly dizzy, and a whole pill makes me so dizzy that it's tough for me to function - it's dangerous to be around machinery when you're significantly dizzy, so I had to stop taking it. I didn't notice the effect at first, but the longer I used it, the more bothersome it became. I don't recall anyone else mentioning this effect, but I did enough testing to be confident that it is definitely true for me. If you've been using Imodium previously without any problems, though, then I doubt that is connected with the problem you are having. It shouldn't react synergistically with Entocort.
The near-Norman suggests that the Entocort may be beginning to work.
As you say, tomorrow should tell the story.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,
Yes, I have noticed a loopiness, fatigue, and mental fog when taking immodium. That makes sense. Bentyl has a similar effect.
What about lomotil? Does that make you feel dizzy too? I have that in my arsenal but I consider it a bigger gun that I hold in reserve until things get really crazy.
Good information.
Rich
Yes, I have noticed a loopiness, fatigue, and mental fog when taking immodium. That makes sense. Bentyl has a similar effect.
What about lomotil? Does that make you feel dizzy too? I have that in my arsenal but I consider it a bigger gun that I hold in reserve until things get really crazy.
Good information.
Rich
Rich,
I've never tried lomotil, so I can't help there. I've noticed though, that over the years many members have reported that the two drugs seem to be so similar that if one doesn't work, they just switch to the other, and often have good results.
Tex
I've never tried lomotil, so I can't help there. I've noticed though, that over the years many members have reported that the two drugs seem to be so similar that if one doesn't work, they just switch to the other, and often have good results.
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.
Gloria,
I had to stop taking it in late March, because the dizziness was getting to be too much of a problem.
Fortunately, my gut adapted to it's new role, soon after, and as long as I don't overdo any eating or drinking late in the day, I don't have any problems during the night. I think I've had to get up during the night once or twice, at the most, to change the pouch, since March. The human body can be surprisingly adaptable, sometimes.
Tex
I had to stop taking it in late March, because the dizziness was getting to be too much of a problem.
Fortunately, my gut adapted to it's new role, soon after, and as long as I don't overdo any eating or drinking late in the day, I don't have any problems during the night. I think I've had to get up during the night once or twice, at the most, to change the pouch, since March. The human body can be surprisingly adaptable, sometimes.
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.
Hi Rich, I'm the one Gloria referred to as one who used Pred. to stop a flare and then switched back to entocort. I had originally tapered off the entocort for a few months, and then experienced a flare in Dec./Jan. I went back on entocort with inital improvement, but started declining after about a week I think. My PCP put me on a 5 day dose of Pred. (20 mg which is actually a low dose) and then switched me to the full entocort dose. I did not have to wait until the entocort was out of my system. It stopped the flare immediately and I felt great on it. I gradually tapered off the entocort and have been off for about 2 1/2 months. The information I posted at that time is on this link (it's on the last page):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10609
I hope this helps you make the decisions you need to. Good Luck, JoAnn
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10609
I hope this helps you make the decisions you need to. Good Luck, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Gabes-Apg
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Rich
I used loperamide at first then when I adopted the Gluten Free, Yeast Free, Dairy Free, Soy Free eating plan, if i had D, the loperamide was too harsh and stopped things
i also when first diagnosed i was prescribed and used Questran Lite at first, and gradually tapered down the dose as things improved, and now i only use it if there is a flare of D.
IF i have a minor flare then I find the Questran quite good as it slows things down, and doesnt totally stop the system.
In June when i did international travel for work - i used a small dose of Questran just before the international flight(s) as a safety net
That is the interesting thing with this cheeky MC Monkey. What works for one person may not work for another, there is a fair amount of trial and error to figure what works best for you.
I used loperamide at first then when I adopted the Gluten Free, Yeast Free, Dairy Free, Soy Free eating plan, if i had D, the loperamide was too harsh and stopped things
i also when first diagnosed i was prescribed and used Questran Lite at first, and gradually tapered down the dose as things improved, and now i only use it if there is a flare of D.
IF i have a minor flare then I find the Questran quite good as it slows things down, and doesnt totally stop the system.
In June when i did international travel for work - i used a small dose of Questran just before the international flight(s) as a safety net
That is the interesting thing with this cheeky MC Monkey. What works for one person may not work for another, there is a fair amount of trial and error to figure what works best for you.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama