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Hi All,
My doc wanted me to wean off Entocort so I started doing so about 30 days ago. I was taking 11 pills a week and I dropped to 10 pills a week for two weeks, then to 9 a week for two weeks and then BAM the big D came back two days before Christmas. I increased the dosage back to 6 mg per day, but I am still having very bad D a week later. Up until now, 6 mg of Entocort was the miracle drug for me, but it does not seem to be working very well....
I am very disappointed. I had hoped that being very careful with diet would permit me to withdraw from the Entocort. And, I did not expect the Entocort to cease working...
Oh well, I see the doc next week. I think the next plan is Imuran. I hope I do as well as Joe!
Celie
Well, I can't get off the Entocort
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Joefnh
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Hi Celie. I noticed something similar with the Entocort, after each time I tried to taper off of it I had to up the dosage again. After upping the dosage though, it did not work as well as it did before trying to taper off of it.
Certainly Imuran should be one of the last resort medications for MC. Imuran does at least for me work very well. But remember Imuran is a powerful immune system suppressant that needs to thought through carefully before starting on it given the potential for problems. If you do go that route be sure to follow your doctors instructions exactly. This will include starting on the medication slowly and increasing the dosage over a month or so. You will need to have blood tests done frequently at first to monitor how well your body is tolerating this medication.
When I started on it for the Crohns & MC, it did initially produce some nausea, but this does pass fairly quickly.
The risk factors for this medication are small but real and they do include potential problems with infections, liver toxicity and a slight increase in cancer risk. I would go over these issues one by one with your doctor to make sure you are fully informed and understand what each of them mean.
I am not meaning to scare you, but making sure that you understand this is not a medication to be taken lightly.
While this med has been a lifesaver for me, Tex has mentioned that for some others on this site, that it had not worked well for MC.
For reference it took a dose of 2.5mg/kg of body weight to achieve remission from the symptoms. Although you should find the minimum dose required to achieve results for you as everybody is different.
Besides the Entocort, have you tried eliminating gluten and soy and maybe dairy from your diet? As you probably know this is the most important first step and for many they can manage MC with diet alone or in combination with a minimum of medications. Even with the Imuran I am still following a diet that is GF/SF/DF. Additionally what other medications have you tried besides Entocort? There are several that seem to work quite well for the members here.
I would hope that this would be a medication of last resort given its potential for problems. If you do go this route just make sure that you are fully informed of the risks and benefits.
I hope you find a solution for MC that works best for you Celie, I fully understand the frustration that this disease can bring.
Take care & Best wishes
--Joe
Certainly Imuran should be one of the last resort medications for MC. Imuran does at least for me work very well. But remember Imuran is a powerful immune system suppressant that needs to thought through carefully before starting on it given the potential for problems. If you do go that route be sure to follow your doctors instructions exactly. This will include starting on the medication slowly and increasing the dosage over a month or so. You will need to have blood tests done frequently at first to monitor how well your body is tolerating this medication.
When I started on it for the Crohns & MC, it did initially produce some nausea, but this does pass fairly quickly.
The risk factors for this medication are small but real and they do include potential problems with infections, liver toxicity and a slight increase in cancer risk. I would go over these issues one by one with your doctor to make sure you are fully informed and understand what each of them mean.
I am not meaning to scare you, but making sure that you understand this is not a medication to be taken lightly.
While this med has been a lifesaver for me, Tex has mentioned that for some others on this site, that it had not worked well for MC.
For reference it took a dose of 2.5mg/kg of body weight to achieve remission from the symptoms. Although you should find the minimum dose required to achieve results for you as everybody is different.
Besides the Entocort, have you tried eliminating gluten and soy and maybe dairy from your diet? As you probably know this is the most important first step and for many they can manage MC with diet alone or in combination with a minimum of medications. Even with the Imuran I am still following a diet that is GF/SF/DF. Additionally what other medications have you tried besides Entocort? There are several that seem to work quite well for the members here.
I would hope that this would be a medication of last resort given its potential for problems. If you do go this route just make sure that you are fully informed of the risks and benefits.
I hope you find a solution for MC that works best for you Celie, I fully understand the frustration that this disease can bring.
Take care & Best wishes
--Joe
Joe
Hi Celie,
I think when you drop off like that it takes some time to get that level back in your colon to control the MC. I would avoid Imuran if you can, as I took it and it created a lot more health problems for me. I got Sjogrens syndrome and Iritis while taking Imuran. My glands were so swollen, the docs thought I had Lymphoma.
You should go back to the normal dosing of Entocort and and work your way back down again.
This, I think, it the most less risky alternative, and you know it works.
Good luck,
karen
I think when you drop off like that it takes some time to get that level back in your colon to control the MC. I would avoid Imuran if you can, as I took it and it created a lot more health problems for me. I got Sjogrens syndrome and Iritis while taking Imuran. My glands were so swollen, the docs thought I had Lymphoma.
You should go back to the normal dosing of Entocort and and work your way back down again.
This, I think, it the most less risky alternative, and you know it works.
Good luck,
karen
Yes, Joe, I started the SCD diet, dairy free around Oct. 15. And, I have also removed soy, eggs and yeast from my diet as my Enterolab results showed sensitivity to those, as well. Since SCD does not seem to be helping me with the D, I plan to work from the food sensitivity results and add back rice and perhaps potatoes. And, yes Joe, this is a very frustrating condition.
My doc is very much against me staying on the Entocort for longer than 6 or 8 months and has had good results with Imuran in other patients. I have other autoimmune issues which are helped by the Entocort, so I really hate to give it up. But, Imuran may help with those as well. I do have a bad track record with some medicines, so I don't know if I will be able to tolerate Imuran. We will see.
If D does not stop here shortly, I will increase Entocort to 9 mg/day. I have not needed that before, but I may now.
My doc told me to study Imuran. She encourages my questions and is supportive of diet as a modulator. She is one of the few docs in our area with experience with MC and she says she thinks Imuran may free me from the constant threat of flares. She says my case is the worst she has treated.
Joe, I read your recent posts with interest because I have been scared by the information on Imuran. You gave me some comfort about agreeing to my doc's plan of treatment. I meet with my doc next week. I shall be interested to see what she says.
Thanks to all!
Celie
My doc is very much against me staying on the Entocort for longer than 6 or 8 months and has had good results with Imuran in other patients. I have other autoimmune issues which are helped by the Entocort, so I really hate to give it up. But, Imuran may help with those as well. I do have a bad track record with some medicines, so I don't know if I will be able to tolerate Imuran. We will see.
If D does not stop here shortly, I will increase Entocort to 9 mg/day. I have not needed that before, but I may now.
My doc told me to study Imuran. She encourages my questions and is supportive of diet as a modulator. She is one of the few docs in our area with experience with MC and she says she thinks Imuran may free me from the constant threat of flares. She says my case is the worst she has treated.
Joe, I read your recent posts with interest because I have been scared by the information on Imuran. You gave me some comfort about agreeing to my doc's plan of treatment. I meet with my doc next week. I shall be interested to see what she says.
Thanks to all!
Celie
Celie,
FWIW, each time I've gone off of Entocort, I've gotten the D back within several weeks. Each time I was sure that I would be able to resolve the D quickly with a reduced dose of Entocort, but I've always had to go back to the full dose. Within a couple of days on the full dose, I've been able to reduce quickly.
I would suggest that you go back to 9 mg/day and see if that will get rid of the D. It's unfortunate that your doctor doesn't believe in long-term Entocort prescriptions because almost all of us who have taken it need to be on it for 6 months to a year before we begin to taper off. It can take that long to ferret out all of our intolerances and allow the gut to heal.
I personally would be extremely reluctant to take Imuran because it's "big guns" medication requiring, as Joe wrote, constant vigilance. Entocort does not. You might want to find another doctor who will be willing to let you stay on Entocort according to the schedule dictated by your body, not the doctor's timeline.
I suspect that you have additional intolerances that weren't tested by Enterolab. I hope you've been keeping a food/elimination diary - most of us find it very helpful in finding those additional intolerances.
Good luck and please keep us updated on your progress.
Gloria
FWIW, each time I've gone off of Entocort, I've gotten the D back within several weeks. Each time I was sure that I would be able to resolve the D quickly with a reduced dose of Entocort, but I've always had to go back to the full dose. Within a couple of days on the full dose, I've been able to reduce quickly.
I would suggest that you go back to 9 mg/day and see if that will get rid of the D. It's unfortunate that your doctor doesn't believe in long-term Entocort prescriptions because almost all of us who have taken it need to be on it for 6 months to a year before we begin to taper off. It can take that long to ferret out all of our intolerances and allow the gut to heal.
I personally would be extremely reluctant to take Imuran because it's "big guns" medication requiring, as Joe wrote, constant vigilance. Entocort does not. You might want to find another doctor who will be willing to let you stay on Entocort according to the schedule dictated by your body, not the doctor's timeline.
I suspect that you have additional intolerances that weren't tested by Enterolab. I hope you've been keeping a food/elimination diary - most of us find it very helpful in finding those additional intolerances.
Good luck and please keep us updated on your progress.
Gloria
You never know what you can do until you have to do it.
Hi Celie,
You've received some great advice from everyone who responded to this thread, and I really can't add much, except to emphasize what Gloria said about the dosage rate for Entocort, in such a situation. As she mentioned, almost everyone who falls out of remission, tries to use a minimum dosage increase to get control again, and it usually doesn't work very well. The problem is, 6mg per day is a maintenance dose, to be used by someone who is in remission. 6mg per day is not a therapeutic dose, (at least not for most people - there are a few exceptions, of course). A therapeutic dose, (for most people), is 9mg per day. The fact that you were in remission prior to the relapse is irrelevant. Once you are back into a full flare, you need a full therapeutic dose, in order to get back into remission. Entocort will work for you again, you just have to use it correctly.
Also, I would be suspicious of the qualifications/motives of a GI doc who considers an immune system suppressant to be a safer treatment than a long-term Entocort treatment. He seems to have his priorities confused, or else he knows very little about Entocort EC. Doctors who are not willing to prescribe Entocort for more than just a few months, do their patients a grave disservice, but I wonder if they realize it, or if they even care.
Tex
You've received some great advice from everyone who responded to this thread, and I really can't add much, except to emphasize what Gloria said about the dosage rate for Entocort, in such a situation. As she mentioned, almost everyone who falls out of remission, tries to use a minimum dosage increase to get control again, and it usually doesn't work very well. The problem is, 6mg per day is a maintenance dose, to be used by someone who is in remission. 6mg per day is not a therapeutic dose, (at least not for most people - there are a few exceptions, of course). A therapeutic dose, (for most people), is 9mg per day. The fact that you were in remission prior to the relapse is irrelevant. Once you are back into a full flare, you need a full therapeutic dose, in order to get back into remission. Entocort will work for you again, you just have to use it correctly.
Also, I would be suspicious of the qualifications/motives of a GI doc who considers an immune system suppressant to be a safer treatment than a long-term Entocort treatment. He seems to have his priorities confused, or else he knows very little about Entocort EC. Doctors who are not willing to prescribe Entocort for more than just a few months, do their patients a grave disservice, but I wonder if they realize it, or if they even care.
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.
For me, the 6mg of Entocort was like a miracle drug. After being sick for 60 days and in the hospital for almost a week trying to figure out what was wrong with me, it gave me significant relief in 24 hours and complete relief in 48. The first doc had me taper off in 30 days - and that did not work. Six mg worked great that time, too. But this time, I may need 9. If I have a bad night again tonight, I plan to move up to 9 tomorrow.
This doc is quite willing to discuss things with me. I will talk to doc about Entocort v Imuran. I have some other issues that may make Imuran a reasonable choice. I am so appreciative of everyone's advice here. Those who have gone before make the road easier for those of us who are just beginning the trek!
Thank you!
Celie
This doc is quite willing to discuss things with me. I will talk to doc about Entocort v Imuran. I have some other issues that may make Imuran a reasonable choice. I am so appreciative of everyone's advice here. Those who have gone before make the road easier for those of us who are just beginning the trek!
Thank you!
Celie
Celie,
Each time I've gone off Entocort and relapsed, it's taken longer for Entocort to take effect when I've resumed taking it. This last time, it took 3 months for it to finally kick in - and that was because I removed a couple more food intolerances from my diet. When I relapsed, I hadn't gone off Entocort at all; I was still taking 3 mg./day.
I should mention that my situation seems to be more difficult than most and you will probably fare better.
Gloria
Each time I've gone off Entocort and relapsed, it's taken longer for Entocort to take effect when I've resumed taking it. This last time, it took 3 months for it to finally kick in - and that was because I removed a couple more food intolerances from my diet. When I relapsed, I hadn't gone off Entocort at all; I was still taking 3 mg./day.
I should mention that my situation seems to be more difficult than most and you will probably fare better.
Gloria
You never know what you can do until you have to do it.
I don't know Gloria, I may be a hard case, too. I can't get down to 3mg a day. I had kept a comfortable remission on one every day and another 4 days a week. But, when we dropped it a little, I relapsed. I had gotten down to taking it 2121121211 when I relapsed. I am beginning to feel a little better today. Perhaps it is beginning to work again. Your experience that it takes longer is apparently true for me, too.
Thanks!
Celie
Thanks!
Celie
It took me years to get down to one pill a day. As my doctor told me.. take whatever you have to take to keep in remission.. there is no cure... Although three months on 9 mg and a fourth month tapering off provides remission (of undetermined length) for most people.. it certainly doesn't work for all people.
grannyh
grannyh