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imuran
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
imuran
hi,after a colonoscopy in may i was told that I had L.C. and put on endocort for 4 weeks at 9mg per day, all went well and my problems stopped but as soon as I went to 6mg per day I had problems again, ie no severe runs but bloating , gas and some explosive stools, they put me back on 9mg and added pentasa, ok again but on reduction the same thing happened, this time they added questran and put me up again to 9mg, at the moment I have no dioreeah but a lot of pain and bloating as the day goes on and masses of wind, next week I go back to hospital for blood tests and they want to put me onto Imuran. My concerns are, A do I need such a heavy drug when I dont have the type of dioreeah that caused big weight loss and also we leave a cold northern climate for 7 weeks in mid winter here to Mauritius which is tropical and I am nervous to take something which will surpress my immune system when I am away from home, any advice or opinions welcome, Beni
Hello Beni and 
Most here who have used Entocort have found it necessary to take it for a longer time (often a MUCH longer time) than their docs initially precribed it. Unfortunately, most docs do not know that it must be used for a longer time than the manufacturer recommends. I believe one member here has been taking it (off and on) for about 2 years now. And tapering off often takes months, not weeks. Furthermore, unless any offending foods (gluten and often dairy and soy too) are also removed from the diet, the MC will likely return once Entocort is discontinued. A few here are currently taking Imuran (one has Crohn's disease as well as MC) and seem to be doing well. It does require very close monitoring, so I can understand why you might not want to be abroad for 7 weeks while taking it. If it were me, I'd probably opt for a longer course of Entocort, along with diet changes for now.
Looking forward to further chats,
Polly
Most here who have used Entocort have found it necessary to take it for a longer time (often a MUCH longer time) than their docs initially precribed it. Unfortunately, most docs do not know that it must be used for a longer time than the manufacturer recommends. I believe one member here has been taking it (off and on) for about 2 years now. And tapering off often takes months, not weeks. Furthermore, unless any offending foods (gluten and often dairy and soy too) are also removed from the diet, the MC will likely return once Entocort is discontinued. A few here are currently taking Imuran (one has Crohn's disease as well as MC) and seem to be doing well. It does require very close monitoring, so I can understand why you might not want to be abroad for 7 weeks while taking it. If it were me, I'd probably opt for a longer course of Entocort, along with diet changes for now.
Looking forward to further chats,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Beni,
Welcome to the board. I'm sorry that your doctors don't understand how to properly treat LC. Polly is quite correct, of course. Drugs can only mask the symptoms of LC, they cannot stop the inflammation from reforming. The inflammation is caused by food-sensitivities, and as long as you continue to eat those foods, you will continue to have new inflammation. The doctors don't understand that when the genes that cause LC are triggered, the genes that cause certain food sensitivities are also triggered, which makes us sensitive to gluten, (even though we are not celiacs, and we will always test negative to the celiac blood tests). Usually, we also become sensitive to casein, (which is the main protein in all dairy products), and at least half of us are sensitive to soy.
The only tests that will accurately and reliably detect these types of food sensitivities are offered by a lab in Dallas, Texas called Enterolab - no other laboratory anywhere in the world is licensed to perform those tests. Many of us here are in remission by diet alone. Some of us have never taken any medications, but were able to achieve remission by diet changes only. Diet is the key to remission, and the relapses that you experienced each time that you lowered the dosage of Entocort was caused by those food-sensitivities in your diet. If you don't want to have to take Imuran, all you have to do is to stop eating the foods that are making you sick. It takes a while for the gut to heal, but most people see some improvement after following the diet for a few weeks or so. It takes at least several months or longer for all of the symptoms to go away, but if you are careful with your diet, the chances are very good that you can reach remission, and stay in remission, without the need for any meds.
Some of us, who have many food-sensitivities, have to use a low dose of Entocort, (one capsule each day, or every other day), along with the diet, in order to remain in remission. I feel the same way as you do - I wouldn't take a powerful immune-system suppressant unless I needed it for an organ transplant. That's what those drugs were designed for. If I had Crohn's disease that refused to respond to diet, I might consider it, but for LC, it shouldn't ever be necessary.
Again, welcome to the board, and please feel free to ask anything.
Tex
Welcome to the board. I'm sorry that your doctors don't understand how to properly treat LC. Polly is quite correct, of course. Drugs can only mask the symptoms of LC, they cannot stop the inflammation from reforming. The inflammation is caused by food-sensitivities, and as long as you continue to eat those foods, you will continue to have new inflammation. The doctors don't understand that when the genes that cause LC are triggered, the genes that cause certain food sensitivities are also triggered, which makes us sensitive to gluten, (even though we are not celiacs, and we will always test negative to the celiac blood tests). Usually, we also become sensitive to casein, (which is the main protein in all dairy products), and at least half of us are sensitive to soy.
The only tests that will accurately and reliably detect these types of food sensitivities are offered by a lab in Dallas, Texas called Enterolab - no other laboratory anywhere in the world is licensed to perform those tests. Many of us here are in remission by diet alone. Some of us have never taken any medications, but were able to achieve remission by diet changes only. Diet is the key to remission, and the relapses that you experienced each time that you lowered the dosage of Entocort was caused by those food-sensitivities in your diet. If you don't want to have to take Imuran, all you have to do is to stop eating the foods that are making you sick. It takes a while for the gut to heal, but most people see some improvement after following the diet for a few weeks or so. It takes at least several months or longer for all of the symptoms to go away, but if you are careful with your diet, the chances are very good that you can reach remission, and stay in remission, without the need for any meds.
Some of us, who have many food-sensitivities, have to use a low dose of Entocort, (one capsule each day, or every other day), along with the diet, in order to remain in remission. I feel the same way as you do - I wouldn't take a powerful immune-system suppressant unless I needed it for an organ transplant. That's what those drugs were designed for. If I had Crohn's disease that refused to respond to diet, I might consider it, but for LC, it shouldn't ever be necessary.
Again, welcome to the board, and please feel free to ask anything.
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.
thank you for your reply, am going to cut out gluten and dairy, been doing loads of research but still cant find out how long its safe to take endocort at 9mg per day, I really need to know as I have a hospital appointment on friday and need to come across as knowing what I am talking about, my consultant is very kind, and supportive but feel sure she wont appreciate me deciding to tell her what I want unless I have proof it is safe for me to take endocort for several months at this dose, thanks for being there beni
Hi Beni,
The only Entocort trials that I'm aware of for Entocort at 9 mg per day are for 8 weeks. That doesn't mean that it's unsafe to take it longer, but most doctors probably interpret it that way. However, here is a report of a trial that shows that there is no more risk of side effects for a full year, (52 weeks), at 6 mg per day, than there is from using 9 mg per day for the short-term treatment. This report is straight from the manufacturer, AstraZeneca, dated June, 2009.
Note that the report shows that they also tested Entocort at 15 mg per day, but no additional benefit was seen, so the data were not included in this report.
This may be of some help - it's the result of a 2-year study, (also from the same report):
http://www.drugs.com/sfx/entocort-ec-side-effects.html
Tex
The only Entocort trials that I'm aware of for Entocort at 9 mg per day are for 8 weeks. That doesn't mean that it's unsafe to take it longer, but most doctors probably interpret it that way. However, here is a report of a trial that shows that there is no more risk of side effects for a full year, (52 weeks), at 6 mg per day, than there is from using 9 mg per day for the short-term treatment. This report is straight from the manufacturer, AstraZeneca, dated June, 2009.
http://www1.astrazeneca-us.com/pi/entocortec.pdfThe safety of ENTOCORT EC was evaluated in 233 patients in four long-term trials (52 weeks). A total of 145 patients were treated with ENTOCORT EC 6 mg. A total of 8% of ENTOCORT EC patitnes discontninued treatment due to adverse events compared with 10% in the placebo group. The adverse event profile in long-term treatment of Crohn's disease was similar to that of short-term treatment with ENTOCORT EC 9 mg in active Crohn's disease.
Note that the report shows that they also tested Entocort at 15 mg per day, but no additional benefit was seen, so the data were not included in this report.
This may be of some help - it's the result of a 2-year study, (also from the same report):
If you would rather not deal with a pdf file, the same information can be found on this page:A randomized, open, parallel-group multicenter safety study specifically compared the effect of Entocort EC (<9 mg/day) and prednisolone (<40 mg/day) on bone mineral density over 2 years when used at doses adjusted to disease severity. Bone mineral density decreased significantly less with Entocort EC than with prednisolone in steroid-naïve patients, whereas no difference could be detected between treatment groups for steroid-dependent patients and previous steroid users. The incidence of treatment-emergent symptoms of hypercorticism was significantly higher with prednisolone treatment.
http://www.drugs.com/sfx/entocort-ec-side-effects.html
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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Joefnh
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Hi Benny it's great to hear from you. I'm sorry that you are dealing with all of this. I am one of the members on this board that is able to treat both MC and and in my case crohns successfully with Imuran.
Imuran I would consider to be a med that I would consider taking when other meds and diet have failed. It is a potent medication and not one to br taken lightly. There are unfortunately those with MC or other gastrointestinal diseases that do not respond to diet or other medications. When the other options have been tried and do not improve the symptoms then the use of meds like Imuran should be considered.
Imuran is an immune systtem suppressant, and should be be considered after other treatments have failed. For myself and one other that I am aware of recently have used it successfully to treat MC. It should be noted that a few others he tried it with limited success.
It's easy for the GI docs to jump to this med as they might be used to using this type of treatment with diagnosis like crohns and ulcerative colitis, but given it's mechanism of action it should be approached as a well informed decision. For me it's been a life saver.
If you have any questions about this please let me know as I would not mind sharing my experiences with you.
Best wishes Benny
Joe
Imuran I would consider to be a med that I would consider taking when other meds and diet have failed. It is a potent medication and not one to br taken lightly. There are unfortunately those with MC or other gastrointestinal diseases that do not respond to diet or other medications. When the other options have been tried and do not improve the symptoms then the use of meds like Imuran should be considered.
Imuran is an immune systtem suppressant, and should be be considered after other treatments have failed. For myself and one other that I am aware of recently have used it successfully to treat MC. It should be noted that a few others he tried it with limited success.
It's easy for the GI docs to jump to this med as they might be used to using this type of treatment with diagnosis like crohns and ulcerative colitis, but given it's mechanism of action it should be approached as a well informed decision. For me it's been a life saver.
If you have any questions about this please let me know as I would not mind sharing my experiences with you.
Best wishes Benny
Joe
Joe
Beni,
I just want to add that I am one that is giving Imuran a try. I began taking it a week ago. I am GF, DF, EF, and SF and have been for several months. Everytime I wean down to 3 mg of Entocort I am back to having more bm's a day and pretty much tied to my house in the morning. I made this decision after much consideration and talking to two others from this forum who are taking it successfully. My doctor suggested taking it and he will monitor my bloodwork to make sure everything is OK. I am hoping I do alright on it. I will go for my first follow up lab test on 10/3 and will know more then. He is keeping me on Entocort until the Imuran kicks in, which can take a few months. Long term he said he would rather see me on Imuran than Entocort. Everyone has to make their own decision and medications can work differently on each one of us. I am hoping I won't have to be on it forever and the healing will continue.
Good luck in making your decision.
Nancy
I just want to add that I am one that is giving Imuran a try. I began taking it a week ago. I am GF, DF, EF, and SF and have been for several months. Everytime I wean down to 3 mg of Entocort I am back to having more bm's a day and pretty much tied to my house in the morning. I made this decision after much consideration and talking to two others from this forum who are taking it successfully. My doctor suggested taking it and he will monitor my bloodwork to make sure everything is OK. I am hoping I do alright on it. I will go for my first follow up lab test on 10/3 and will know more then. He is keeping me on Entocort until the Imuran kicks in, which can take a few months. Long term he said he would rather see me on Imuran than Entocort. Everyone has to make their own decision and medications can work differently on each one of us. I am hoping I won't have to be on it forever and the healing will continue.
Good luck in making your decision.
Nancy