Another reason to avoid Imuran is that you have to have many, many, many blood tests. I felt like a pin cushion when I was taking it. And they are expensive. If it had worked for me I guess I would have thought they were worth it but it didn't work. My doctor wasn't concerned about me taking it either. He was actually more concerned about the Entocort because it didn't have the long track record that Imuran has, too many unknowns and it is a steroid. He said he had several patients that had been on Imuran for 20 years or so and they were doing great. I don't think they were taking it for MC though. Just FYI.
Pat
Imuran
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gloria and Tex, I take Budez CR which I get from a Canadian pharmacy. It is the same product as Ant uses. It is manufactured by Sun Pharmaceutical. The information in the paper that comes with it states:
BUDEZ CR Composition: Each capsule contains Budesonide BP 3mg (as controlled release pellets)
MECHANISM OF ACTION: Budesonide has high glucocorticoid effect and a weak mineralcorticoid effect and the affinity of budesonide to glucocorticorsteroid is about 200 fold that of cortisol and 15 fold that of prednisone. DATA FROM CLINICAL PHARMACOLOGY STUDIES INDICATE THAT THE MODE OF ACTION OF BUDESONIDE CONTROLLED RELEASE CAPSULE IS BASED ON A LOCAL ACTION IN THE GUT. At doses clinically equivalent to prednisone, budesonide gives significantly less HPA axis suppression and has a lower impact in inflammatory markers.
I can't interpret all of that, but I've used it for months and have had no bad effects. I'm only using one every other day and hope to be off in a week. It has worked just as effectively for me as the very expensive name brand Entocort.
Gloria, I'm glad you're doing better and I agree with everything you said about entocort. It has allowed me to live my life and keep working. I'm one who had bad reactions to high levels of L-Glutamine. BTW, I also think I react to chicken. I know I'm in the minority, but I have even used the organic, hormone, everything free chicken, and I still have problems. I haven't eaten it in months. My body does well with beef and fish. I hope your progress continues. JoAnn
BUDEZ CR Composition: Each capsule contains Budesonide BP 3mg (as controlled release pellets)
MECHANISM OF ACTION: Budesonide has high glucocorticoid effect and a weak mineralcorticoid effect and the affinity of budesonide to glucocorticorsteroid is about 200 fold that of cortisol and 15 fold that of prednisone. DATA FROM CLINICAL PHARMACOLOGY STUDIES INDICATE THAT THE MODE OF ACTION OF BUDESONIDE CONTROLLED RELEASE CAPSULE IS BASED ON A LOCAL ACTION IN THE GUT. At doses clinically equivalent to prednisone, budesonide gives significantly less HPA axis suppression and has a lower impact in inflammatory markers.
I can't interpret all of that, but I've used it for months and have had no bad effects. I'm only using one every other day and hope to be off in a week. It has worked just as effectively for me as the very expensive name brand Entocort.
Gloria, I'm glad you're doing better and I agree with everything you said about entocort. It has allowed me to live my life and keep working. I'm one who had bad reactions to high levels of L-Glutamine. BTW, I also think I react to chicken. I know I'm in the minority, but I have even used the organic, hormone, everything free chicken, and I still have problems. I haven't eaten it in months. My body does well with beef and fish. I hope your progress continues. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Thank you for the good wishes, JoAnn. I am hopeful that I am back on track.
Interesting that you also react to chicken. You, like me, are one of the few on the board who tested intolerant to eggs. Lucy and I believe Polly also are intolerant to them. I wonder if they have had problems with chicken? Maybe I should do a poll...
Can you still tolerate eggs in baked products?
Gloria
Interesting that you also react to chicken. You, like me, are one of the few on the board who tested intolerant to eggs. Lucy and I believe Polly also are intolerant to them. I wonder if they have had problems with chicken? Maybe I should do a poll...
Can you still tolerate eggs in baked products?
Gloria
You never know what you can do until you have to do it.
Morning!
Here is a cautionary tale about Sally Read, our wonderful, beloved founder of this website. I know she would share it herself if she were still alive.
When Sally was diagnosed with MC about 11-12 years ago, Entocort was not yet available. She was treated with Lotronex, a dangerous big gun now only used for diarrhea-predominant IBS. You literally have to sign your life away (informed consent) to be able to take it now.
Info about the connection between gluten and MC was just beginning to be available on Dr. Fine's website, so Sally took his early tests and found out she was gluten sensitive and had genes that predisposed to gluten sensitivity. She tackled the GF diet with great gusto, learning to adapt recipes and even growing her own herbs. She tried the diet for 6 mos. but did not see significant improvement, so she stopped it.
Here is the sad part...........at that time we did not have the experience here yet to know that diet often took longer than 6 mo. to work or even that many have MULTIPLE sensitivites . In fact, I was the first to discover intolerances in addition to gluten, and it took me 9 mo. to see results. When I look at this incredible website now, it is hard to believe that, initially, there were only a handful of us feeling our way around this disease, looking for answers, and trying to help each other cope.
Sally then was placed on long-term prednisone, which caused many problems, not the least of which was an awful withdrawal when she tried to reduce it. I believe you can find her post about this in one of the forums on meds - Tex, I'm sure you can find it.
After prednisone, Sally was placed on longterm Imuran. She continued to develop health problems. Of course, I can't say for sure that the big gun meds led to her death, but I do know that she was absolutely exhausted and discouraged by her MC course.
Over the years, as we began to document the value of diet in MC, Sally and I spoke several times about whether or not she should try diet again. I believe she considered it, but was so totally worn out by her disease that she just didn't have the energy to make a major lifestyle change again at that point. At least that's what I believe was the case.
I'm sure Sally is here with us in spirit and cheering us on! She was always searching for answers and wanting to share her experience to help others. She would be thrilled with our progress.
Love,
Polly
Here is a cautionary tale about Sally Read, our wonderful, beloved founder of this website. I know she would share it herself if she were still alive.
When Sally was diagnosed with MC about 11-12 years ago, Entocort was not yet available. She was treated with Lotronex, a dangerous big gun now only used for diarrhea-predominant IBS. You literally have to sign your life away (informed consent) to be able to take it now.
Info about the connection between gluten and MC was just beginning to be available on Dr. Fine's website, so Sally took his early tests and found out she was gluten sensitive and had genes that predisposed to gluten sensitivity. She tackled the GF diet with great gusto, learning to adapt recipes and even growing her own herbs. She tried the diet for 6 mos. but did not see significant improvement, so she stopped it.
Here is the sad part...........at that time we did not have the experience here yet to know that diet often took longer than 6 mo. to work or even that many have MULTIPLE sensitivites . In fact, I was the first to discover intolerances in addition to gluten, and it took me 9 mo. to see results. When I look at this incredible website now, it is hard to believe that, initially, there were only a handful of us feeling our way around this disease, looking for answers, and trying to help each other cope.
Sally then was placed on long-term prednisone, which caused many problems, not the least of which was an awful withdrawal when she tried to reduce it. I believe you can find her post about this in one of the forums on meds - Tex, I'm sure you can find it.
After prednisone, Sally was placed on longterm Imuran. She continued to develop health problems. Of course, I can't say for sure that the big gun meds led to her death, but I do know that she was absolutely exhausted and discouraged by her MC course.
Over the years, as we began to document the value of diet in MC, Sally and I spoke several times about whether or not she should try diet again. I believe she considered it, but was so totally worn out by her disease that she just didn't have the energy to make a major lifestyle change again at that point. At least that's what I believe was the case.
I'm sure Sally is here with us in spirit and cheering us on! She was always searching for answers and wanting to share her experience to help others. She would be thrilled with our progress.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Polly thanks for the note and the reminder about Sally's struggle early on. While the enotocort has worked well, I am also following a long term strict diet that is GF/LF and YF. I have been on this diet (see Gabes simplified diet) for about 2 months now and plan on staying on it for the long term.
It is my hope that now that the severe symptoms are under control, and I have been on the diet for a while that I can reduce the entocort and manage this with diet alone. I am concerned about the crohns aspect though (I have both MC and crohns) Can I also keep the crohns symptoms at bay with diet alone? I hope so. I really do not like the idea of anything stronger.
--Joe
It is my hope that now that the severe symptoms are under control, and I have been on the diet for a while that I can reduce the entocort and manage this with diet alone. I am concerned about the crohns aspect though (I have both MC and crohns) Can I also keep the crohns symptoms at bay with diet alone? I hope so. I really do not like the idea of anything stronger.
--Joe
Joe
Polly,
The first two links to threads listed below, were written by Sally, describing her struggle as she tried to withdraw from prednisone. The second one is simply an addendum to the first. The third link below, includes some comments about withdrawal by both Sally and Marsha, who also went through prednisone withdrawal.
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
Like Polly, I too suspect that the severity of the combined stress from the drug treatments that she endured, and the symptoms of the disease itself, were probably factors in her untimely death. She was having severe MC symptoms the day before her body gave up the fight.
The GI doctors classify microscopic colitis is a "benign" disease, implying that it does not carry an increased mortality risk. I have a few doubts about that, especially in the long run, with severe cases. Also, there is no question that some of the drugs that they prescribe to treat the disease can cause significant permanent damage to vital organs, and change body chemistry in undesirable ways, which, in some situations, can certainly provide the "straw that broke the camel's back". There is a limit to the stress that the body can sustain, especially on a long-term basis.
Sally was a true pioneer, in dealing with this disease.
Love,
Tex
P. S. Joe, we have at least a couple of members who have achieved, and maintained remission from ulcerative colitis, by diet alone, so I see no reason why it cannot be done for Crohn's disease, as well.
The first two links to threads listed below, were written by Sally, describing her struggle as she tried to withdraw from prednisone. The second one is simply an addendum to the first. The third link below, includes some comments about withdrawal by both Sally and Marsha, who also went through prednisone withdrawal.
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
http://www.perskyfarms.com/phpBB2/viewt ... withdrawal
Like Polly, I too suspect that the severity of the combined stress from the drug treatments that she endured, and the symptoms of the disease itself, were probably factors in her untimely death. She was having severe MC symptoms the day before her body gave up the fight.
The GI doctors classify microscopic colitis is a "benign" disease, implying that it does not carry an increased mortality risk. I have a few doubts about that, especially in the long run, with severe cases. Also, there is no question that some of the drugs that they prescribe to treat the disease can cause significant permanent damage to vital organs, and change body chemistry in undesirable ways, which, in some situations, can certainly provide the "straw that broke the camel's back". There is a limit to the stress that the body can sustain, especially on a long-term basis.
Sally was a true pioneer, in dealing with this disease.
Love,
Tex
P. S. Joe, we have at least a couple of members who have achieved, and maintained remission from ulcerative colitis, by diet alone, so I see no reason why it cannot be done for Crohn's disease, as well.
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.
Dear Joe
Here is my timeframe.
28 June 2009 to 31st Jan 2010 ....... 9 mg per day
1st Feb 2010 to 10th March 2010.... 6mg per day
11th March to 22nd June 2010......... 3mg per day
23rd June 2010 to date....... 3mg every other day
I was egg, gluten, dairy and legume (inc soy) free all this time except for a terrible gluten and dairy "challenge" in the beginning of July 2009. I only added nightshades free as part of my diet around November last year. I have also tried to avoid fructose.
Thanks to this board I have not jumped too quickly into tapering down (and in the process ignored my doctors' advice, which would have had me off Entocort too quickly). I have timed my reductions based on what I feel my body can handle and sensing the state of my gut based on BMs, frequency (1 or 2 a day) and other signs like no bloating and gurgling. I only reduce after at least three weeks of no bloating and gurgling and only if 90% of bms are not loose or D and frequency of no more than 2 bms a day.
During the process of tapering down I have had ups and downs (including short - two or three days of flares) but, so far, the trend is very gradual improvement. Of course, each time I taper down I worry I may have come off too soon and could go into relapse.
Hope this helps, best, Ant
Here is my timeframe.
28 June 2009 to 31st Jan 2010 ....... 9 mg per day
1st Feb 2010 to 10th March 2010.... 6mg per day
11th March to 22nd June 2010......... 3mg per day
23rd June 2010 to date....... 3mg every other day
I was egg, gluten, dairy and legume (inc soy) free all this time except for a terrible gluten and dairy "challenge" in the beginning of July 2009. I only added nightshades free as part of my diet around November last year. I have also tried to avoid fructose.
Thanks to this board I have not jumped too quickly into tapering down (and in the process ignored my doctors' advice, which would have had me off Entocort too quickly). I have timed my reductions based on what I feel my body can handle and sensing the state of my gut based on BMs, frequency (1 or 2 a day) and other signs like no bloating and gurgling. I only reduce after at least three weeks of no bloating and gurgling and only if 90% of bms are not loose or D and frequency of no more than 2 bms a day.
During the process of tapering down I have had ups and downs (including short - two or three days of flares) but, so far, the trend is very gradual improvement. Of course, each time I taper down I worry I may have come off too soon and could go into relapse.
Hope this helps, best, Ant
Gloria,
I didn't mean what I said as a swipe at you or anyone else who has chosen to take Entocort. Obviously it has worked for many people. I was fortunate that I didn't need to go that route and wish that more people would consider L-Glutamine, since it worked so well for me. I approach everything with caution, especially when it comes to steroids and immune suppressants, as I have friends whose lives and health have been permanently damaged by them. I wonder what would have happened to me if I'd taken methotrexate, had surgeries, etc. that were needless had they properly dx me in the first place. I will always research and question ANY drug prescribed.
In Olivia's case I feel like they are not giving her the care she needs. The military doesn't have a good record under the best of circumstances, for either vets or active troops. It seems like they are throwing all the big guns at her right out of the gate w/o considering any other options that don't have the side effects that many people have had even with Entocort. I know our MD's do this as well.
Peace,
Connie
I didn't mean what I said as a swipe at you or anyone else who has chosen to take Entocort. Obviously it has worked for many people. I was fortunate that I didn't need to go that route and wish that more people would consider L-Glutamine, since it worked so well for me. I approach everything with caution, especially when it comes to steroids and immune suppressants, as I have friends whose lives and health have been permanently damaged by them. I wonder what would have happened to me if I'd taken methotrexate, had surgeries, etc. that were needless had they properly dx me in the first place. I will always research and question ANY drug prescribed.
In Olivia's case I feel like they are not giving her the care she needs. The military doesn't have a good record under the best of circumstances, for either vets or active troops. It seems like they are throwing all the big guns at her right out of the gate w/o considering any other options that don't have the side effects that many people have had even with Entocort. I know our MD's do this as well.
Peace,
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Stanz,
I didn't take your comments personally. We are all free to express our opinions and I know you have strong objections to steroids. I did, too, and looked at my prescription for a month before I filled it. Diet wasn't working for me, so I reluctantly took Entocort. I haven't had any side effects from it however, and I don't hesitate to recommend it for people who can't initially can't control their MC with diet alone.
I agree that Olivia isn't getting adequate medical care. I also agree that her GI is prescribing too big of guns without giving standard treatment adequate time to work. She's in a tough spot. The military doesn't look too kindly on dissent. I hope she will begin to make some progress soon.
Gloria
I didn't take your comments personally. We are all free to express our opinions and I know you have strong objections to steroids. I did, too, and looked at my prescription for a month before I filled it. Diet wasn't working for me, so I reluctantly took Entocort. I haven't had any side effects from it however, and I don't hesitate to recommend it for people who can't initially can't control their MC with diet alone.
I agree that Olivia isn't getting adequate medical care. I also agree that her GI is prescribing too big of guns without giving standard treatment adequate time to work. She's in a tough spot. The military doesn't look too kindly on dissent. I hope she will begin to make some progress soon.
Gloria
You never know what you can do until you have to do it.
My GI doc said Imuran was heavy duty drug and sort of a last resort along with some other drugs that are used in cancer treatments.
It took me several years to get down to 2 entocort a day.. and then I carefully went to one a day. I have my life back.
As I have mentioned before.. I have to wonder how much "cost" plays into what doctors suggest for treatment. Meaning what an individual's insurance will pay for.. if they have insurance. Most insurance will pay for a colonoscopy yet many won't pay for entocort... go figure.
Recently, my neighbor, a nurse, went to my gastro doc for various gastro problems.. she was as impressed with him as I am. She has suggested to at least one of HER patients that they see my gastro doc as well. He does not believe in running a colonoscopy clinic for the money. Once he knows what is wrong.. he treats you.. and lets you make up your mind what path you want to take. He has never had a problem with me belonging to this forum. He let me try diet til I was willing to try entocort.
So many people are also "stuck" with a doctor on their "plan"... and have no other avenue for help without paying out of pocket. IMO it will only get worse here in the US when Obamacare goes into full effect. I am in an age group that statistically will not be worth spending much money on...sigh....
grannyh
It took me several years to get down to 2 entocort a day.. and then I carefully went to one a day. I have my life back.
As I have mentioned before.. I have to wonder how much "cost" plays into what doctors suggest for treatment. Meaning what an individual's insurance will pay for.. if they have insurance. Most insurance will pay for a colonoscopy yet many won't pay for entocort... go figure.
Recently, my neighbor, a nurse, went to my gastro doc for various gastro problems.. she was as impressed with him as I am. She has suggested to at least one of HER patients that they see my gastro doc as well. He does not believe in running a colonoscopy clinic for the money. Once he knows what is wrong.. he treats you.. and lets you make up your mind what path you want to take. He has never had a problem with me belonging to this forum. He let me try diet til I was willing to try entocort.
So many people are also "stuck" with a doctor on their "plan"... and have no other avenue for help without paying out of pocket. IMO it will only get worse here in the US when Obamacare goes into full effect. I am in an age group that statistically will not be worth spending much money on...sigh....
grannyh
I totally agree with Gloria. If it wasn't for Entocort, I would not be functioning! AND I also hate to see such negative remarks when we are all trying to do the best that we can. It is very difficult to deal with many intolerances. I have also used the L-Glutamine now for the last six weeks and have seen no improvement over what I was doing.
Of course everyone is entitled to their remarks, but I now look for affirmative and positive solutions on this board. Ginny
Of course everyone is entitled to their remarks, but I now look for affirmative and positive solutions on this board. Ginny
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Ginny I would have to agree, entocort does work well, although it is one of the 'big guns', it is better than most in how well for most people it seems to be tolerated.
I was in a very bad place in April and lost 15 pounds in just a few weeks, nothing would stay in me and the only med that worked was entocort. My intent is to use it to put this latest flare in it place and then work hard to keep it there after tapering off, hopefully without any meds.
I plan on following a strict diet to give my body the best opportunity to heal and function. I will also be looking into alternative treatments to evaluate there effectiveness for my body. If it gets that bad again I will not hesitate to use entocort again.
For me the side effects have been minimal, with my only complaint being an occasional very mild sinus headache.
Thanks
--Joe
I was in a very bad place in April and lost 15 pounds in just a few weeks, nothing would stay in me and the only med that worked was entocort. My intent is to use it to put this latest flare in it place and then work hard to keep it there after tapering off, hopefully without any meds.
I plan on following a strict diet to give my body the best opportunity to heal and function. I will also be looking into alternative treatments to evaluate there effectiveness for my body. If it gets that bad again I will not hesitate to use entocort again.
For me the side effects have been minimal, with my only complaint being an occasional very mild sinus headache.
Thanks
--Joe