Good deal....
Stay the course....I'm still taking 5000iu and at minimum 400mg of Mag every day.....
If it were me I think I'd take a deep breath....and start looking at what my diet consists of and re-group once again to a small choice of foods and let my body try to tell me what it doesn't like. You may need an antihistamine to settle things down a bit to, day and night (you will know if it is working or not).
I feel you have a good chance of taking your trip if you learn what could be holding up your healing process.
Hugs
ENTOCORT, OSTEOPOROSIS, AND TAPERING
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Adele,
I'm so sorry that your doctor is an idiot. Stopping a corticosteroid cold turkey is enough to trigger a relapse because of the mast cell population rebound (and the cortisol collapse), even if your diet is correct. No one who understands how corticosteroids work would intentionally do that. If you have been taking budesonide for more than a year, that constitutes flagrant malpractice.
PM me or email me if you need to know where to buy budesonide without a prescription, for pennies on the dollar.
Tex
I'm so sorry that your doctor is an idiot. Stopping a corticosteroid cold turkey is enough to trigger a relapse because of the mast cell population rebound (and the cortisol collapse), even if your diet is correct. No one who understands how corticosteroids work would intentionally do that. If you have been taking budesonide for more than a year, that constitutes flagrant malpractice.
PM me or email me if you need to know where to buy budesonide without a prescription, for pennies on the dollar.
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.
Adele, this just makes me sick! Of course you know that I started this thread in March, and if you've seen my recent update, that the GI refused to prescribe any more Entocort, and talked me into a colonoscopy which was a total waste of time and effort except it relieved his mind when he found no Crohn's or Ulcerative Colitis. He tried again to put me on Lialda when Apriso had been a total disaster. I'm kind of on hold until after I take a couple of trips this summer, prolly will try to get a new GI.
Hope you get some relief, all the best, Beverly
Hope you get some relief, all the best, Beverly
If I were you I'd take Tex's advice and get back on some Entocort. I've been on and off several times over the years and i has never failed to put me in remission. I'm taking 3 a week now and doing pretty good.
I wonder if you should back off the magnesium for a few days until you get the D under control?
Sue
I wonder if you should back off the magnesium for a few days until you get the D under control?
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
The irony is I had planned on tapering off the Entocort in October after I got home to Florida after all the trips. I left the ER this afternoon with a Rx for Entocort for 6 weeks: 2 weeks at 9 mg, 2 weeks at 6 mg and 2 weeks at 3 mg. Ostensibly I’ll be able to get back in to see this GI by then. But I don’t really want to. By Oct 1 I’ll be back in Florida and can see my GI there who I don’t teally like but who will do what I want and who can then work with me. Understand?
No matter where you go, there you are.
with Sue. I'm not familiar with Remag's side effects, but that's a lot of magnesium. I would at least drop the dose to 200–300 mgs per day, and even that amount might be too much while you are in a relapse. Getting out of a relapse can turn out to be a tough project.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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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
That sounds like a plan that should work. Hopefully in a few days the budesonide will begin to take effect.
Best of luck in your recovery.
Tex
Best of luck in your recovery.
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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Adele13348
- Little Blue Penguin
- Posts: 42
- Joined: Thu Oct 30, 2014 11:29 pm
- Location: Pensacola Florida
Relapse update
I have been on 9 mg of entocort AGAIN and up to 16 mg of loperamide daily since my ER visit of a few weeks ago. I think I am slowly improving, at least the number of D are lessening so I am backing off the loperamide. I am, however, having significantly more pain this time than I have ever had before. In the past, turmeric has helped a lot with this (I always thought this was inflammation) and it would come and go but it is now almost constant and is not improving even with turmeric. My diet has consisted of ground turkey, potatoes, rice, broth and tea. I cut back on the ReMag per Tex's suggestions but the leg cramps were wicked so I went back on my full dose. Didn't seem to make the D any worse (or any better). Any thoughts on the pain? I'm still hoping to go on my Ireland trip on a September 6th. Please don't tell me it's a pipe dream!
No matter where you go, there you are.
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grannykathy
- Adélie Penguin
- Posts: 213
- Joined: Fri Jun 08, 2018 12:21 pm
Hi Adele,
This is just my opinion (not supported by published research), but I have a hunch that this disease sometimes has unexplained effects on nerves.
For example, back when I was initially reacting, conventional painkillers did not work for me. While I was recovering, one day while I was climbing into the back of a semi so that I could load it, a strong gust of wind caused me to lose my balance and I fell backward onto the ground. I tried to save my back by trying to break my fall with my left arm. I saved my back all right, but I broke my arm at the wrist. When I got to the ER, I told the doctor that the spinal injection to kill the pain wouldn't work. He laughed and said "it always works". I don't remember how I knew that it wouldn't work, but it didn't. He gave me a second injection and that one didn't work either. Flustered, he asked me what they should do.
I told him to set my arm, that's why I came. I guess they were all out of silver bullets to bite, so they gave me a rubber ball to squeeze with my other hand. He set my arm, but apparently he was kind of rattled, because my arm wound up a bit crooked.
Anyway, my point is that obviously my pain receptors were somehow altered when the disease was still active, and certain painkillers didn't work. Now, they work pretty much normally again.
The original description of CC did not mention pain, so many doctors assume that MC is painless. And we know that this is true for some patients. But for many of us, the pain can be extreme at times, almost unbearable. I have had short reactions that included watery diarrhea, but were absolutely painless — but when the disease originally developed, after 2 or 3 years without successful treatment, the pain reached extreme levels on some days. So I have a hunch that the pain level reflects the sum of the accumulated damage and the level of inflammation in the intestines.
During years of reacting initially, I cycled between diarrhea and constipation about every 2 or 3 weeks. I noticed that the pain (from cramps, at least) was usually the most intense, a day or 2 before the diarrhea ended and my symptoms switched to constipation (or occasionally a day or so of normal BMs). Then the diarrhea would start again, and the pain would build.
It's a complex disease in some cases. I hope this is helpful.
Tex
This is just my opinion (not supported by published research), but I have a hunch that this disease sometimes has unexplained effects on nerves.
For example, back when I was initially reacting, conventional painkillers did not work for me. While I was recovering, one day while I was climbing into the back of a semi so that I could load it, a strong gust of wind caused me to lose my balance and I fell backward onto the ground. I tried to save my back by trying to break my fall with my left arm. I saved my back all right, but I broke my arm at the wrist. When I got to the ER, I told the doctor that the spinal injection to kill the pain wouldn't work. He laughed and said "it always works". I don't remember how I knew that it wouldn't work, but it didn't. He gave me a second injection and that one didn't work either. Flustered, he asked me what they should do.
I told him to set my arm, that's why I came. I guess they were all out of silver bullets to bite, so they gave me a rubber ball to squeeze with my other hand. He set my arm, but apparently he was kind of rattled, because my arm wound up a bit crooked. Anyway, my point is that obviously my pain receptors were somehow altered when the disease was still active, and certain painkillers didn't work. Now, they work pretty much normally again.
The original description of CC did not mention pain, so many doctors assume that MC is painless. And we know that this is true for some patients. But for many of us, the pain can be extreme at times, almost unbearable. I have had short reactions that included watery diarrhea, but were absolutely painless — but when the disease originally developed, after 2 or 3 years without successful treatment, the pain reached extreme levels on some days. So I have a hunch that the pain level reflects the sum of the accumulated damage and the level of inflammation in the intestines.
During years of reacting initially, I cycled between diarrhea and constipation about every 2 or 3 weeks. I noticed that the pain (from cramps, at least) was usually the most intense, a day or 2 before the diarrhea ended and my symptoms switched to constipation (or occasionally a day or so of normal BMs). Then the diarrhea would start again, and the pain would build.
It's a complex disease in some cases. I hope this is helpful.
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,
Published medical research shows that it may be possible to take a reduced rate of budesonide (6 mg per day or less) indefinitely with no significant risk of problems (and many members here have been taking it for many years); but at full rates, you may have an increased risk of osteoporosis after a few years. There must be something cross-contaminating your diet. You have to read labels very carefully and avoid commercially-processed products with a long ingredient list. I hope you can track down the problem.
Tex
Published medical research shows that it may be possible to take a reduced rate of budesonide (6 mg per day or less) indefinitely with no significant risk of problems (and many members here have been taking it for many years); but at full rates, you may have an increased risk of osteoporosis after a few years. There must be something cross-contaminating your diet. You have to read labels very carefully and avoid commercially-processed products with a long ingredient list. I hope you can track down the problem.
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.