Morning All,
I spoke with my gastro earlier this week and will be seeing him next week and he wanted me to get some insight from my board friend - novel idea that my doctor encourages conversation with others re: this condition - as to whether any of us have used Pentasa with good/bad results. He knows Asacol is out for me and is not entirely in favor of Entocort since he knows that I am one who he has mentioned steriods to and got nowhere with the conversation. I told him at this point if it works, I will give it a try.
I remember back that little Courtney took Pentasa and found it on a search but not much more. Any information would be helpful and have attached a link re: Pentasa.
http://www.gihealth.com/html/education/ ... ntasa.html
Thanks for any of your help and Love, Maggie
Pentasa
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Pentasa
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi Maggie!
I've never taken Pentasa, but I did take Asacol when I initially was diagnosed with MC, but then had to stop the Asacol when I developed an intolerance to dairy.
I can give you some insight about the Entocort. My PCP was the one to first prescribe it for me. I started out taking 3-3mgs in the morning like it is advised. Within 3 weeks I had the D under control. I did have some minor bruising and occasional foot cramps, but the longer on the Entocort those symptoms lessened. Other than those side effects, I haven't had any problems. Now, my GI prescribes it for me and says there should be no problems taking it long term. I had weaned myself down to just 1 a day, until being prescribed Paxil 2 weeks ago and it caused me to go into a flare. So, I have upped my Entocort to 2 a day to try to get the D under control again.
My suggestion is to try it and be patient because it is not a med that starts working right away. It takes a while to get the inflammation under control.
You can also take lomotil along with the Entocort if you are having the D numerous times a day. I have had to do that before on the advise of my GI.
Hope I've been a help to your decision making.
Love
Dee~~~~
I've never taken Pentasa, but I did take Asacol when I initially was diagnosed with MC, but then had to stop the Asacol when I developed an intolerance to dairy.
I can give you some insight about the Entocort. My PCP was the one to first prescribe it for me. I started out taking 3-3mgs in the morning like it is advised. Within 3 weeks I had the D under control. I did have some minor bruising and occasional foot cramps, but the longer on the Entocort those symptoms lessened. Other than those side effects, I haven't had any problems. Now, my GI prescribes it for me and says there should be no problems taking it long term. I had weaned myself down to just 1 a day, until being prescribed Paxil 2 weeks ago and it caused me to go into a flare. So, I have upped my Entocort to 2 a day to try to get the D under control again.
My suggestion is to try it and be patient because it is not a med that starts working right away. It takes a while to get the inflammation under control.
You can also take lomotil along with the Entocort if you are having the D numerous times a day. I have had to do that before on the advise of my GI.
Hope I've been a help to your decision making.
Love
Dee~~~~
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
hiya Maggs----
If U remember waaaaaaaaaaaay back(and if I keep going waaaaaaaaaaay back I shall disappear
) when I started with Asacol----it was then a newly anti-inflammatroy-given great reviews--BUT for me it wasnt---
Remember when I would inspect the
and would find part of the capsule floating around???
Didnt get Xcited Xcept when one morning I find !!3!! capsules in the bowl--ran to the pharmacy(cus I think it was new years day) and she told me STOP---
Evidently it is common for part of the capsule to be *floating* in the bowl which has released the contents!!! but I had no luck with that pill---but certainly not !!3!!!
What did me a world of good was the PRED.
and Colazal~~I even had problems with ENTOCORT 
So dear Lady M. success with whichever U choose to take---U have to get yourself more together---
Namaste--
Barbara
If U remember waaaaaaaaaaaay back(and if I keep going waaaaaaaaaaay back I shall disappear
) when I started with Asacol----it was then a newly anti-inflammatroy-given great reviews--BUT for me it wasnt---Remember when I would inspect the
and would find part of the capsule floating around??? Didnt get Xcited Xcept when one morning I find !!3!! capsules in the bowl--ran to the pharmacy(cus I think it was new years day) and she told me STOP---
Evidently it is common for part of the capsule to be *floating* in the bowl which has released the contents!!! but I had no luck with that pill---but certainly not !!3!!!
What did me a world of good was the PRED.
and Colazal~~I even had problems with ENTOCORT So dear Lady M. success with whichever U choose to take---U have to get yourself more together---
Namaste--
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
I too took Asacol and saw those little caps in the toilet bowl... I kept asking my DR about it and he said it was normal. Well one day I brought one in to his office (in 3 zip lock bags mind you) and he was like "Oh crap." So we immediately eneded that. He actually said, "Why didnt you tell me this was happening?" and I was like WHAT!!!!!!!!!???????????!!!!!!!!!
Entocort worked great for me. It took about 2.5-3 weeks to totally kick in and I am glad I stuck with it. I was about to swtich to Pred and the next day I woke up feeling so much better. I would highly recommend Entocort since it is nothing like Pred. It disolves in your intestines and very little enters your blood stream (quite the opposite of Pred).
If the entocort didnt work I was going to try Pentassa. If you end up taking it let me know how it goes.
Dee- Why would you have to stop asacol if you had an intolerance to dairy? Does it have dairy in it? Did colazal not have dairy?
Entocort worked great for me. It took about 2.5-3 weeks to totally kick in and I am glad I stuck with it. I was about to swtich to Pred and the next day I woke up feeling so much better. I would highly recommend Entocort since it is nothing like Pred. It disolves in your intestines and very little enters your blood stream (quite the opposite of Pred).
If the entocort didnt work I was going to try Pentassa. If you end up taking it let me know how it goes.
Dee- Why would you have to stop asacol if you had an intolerance to dairy? Does it have dairy in it? Did colazal not have dairy?
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Thanks for all the input everyone.
Barbara, I do remember that.
I took Asacol and when they got me up to 12 per day 3 @ a time 4x per day I gave up. They did me zero good. The Lomotil I take at times but it really does make a true Bitxx out of me. Why I have no idea.
Will see Dr. Gastro next week and decide what to do from there.
Love, Maggie
Barbara, I do remember that.
I took Asacol and when they got me up to 12 per day 3 @ a time 4x per day I gave up. They did me zero good. The Lomotil I take at times but it really does make a true Bitxx out of me. Why I have no idea.
Will see Dr. Gastro next week and decide what to do from there.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
So maybe that is why I got worse while on asacol because of the stupid lactose. I was told if there was any lactose in it it was way too small to cause any problems.
Blech
Blech
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
I worried about taking a synthetic steroid... however, Entocort EC has given me my life back!
It was explained that each Entocort pill contains 3 mg of synthetic steroid and I absorb only about 10 % of the 3 mg in each capsule.
I did OD on regular steroids that were given to me when I had a back problem... that is a scary experience to be sure.
My gastro doc claims there are fewer risks with Entocort than pentasa so I went with the Entocort after pondering my decision for over a year.. have been on Entocort for two years now...
grannyh
It was explained that each Entocort pill contains 3 mg of synthetic steroid and I absorb only about 10 % of the 3 mg in each capsule.
I did OD on regular steroids that were given to me when I had a back problem... that is a scary experience to be sure.
My gastro doc claims there are fewer risks with Entocort than pentasa so I went with the Entocort after pondering my decision for over a year.. have been on Entocort for two years now...
grannyh
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Entorcort worked well for me too along with a strict diet, now I'm dieting only to control my symptoms but I worry about you Grannyh and others that continue to ingest gluten because your feeling so good while taking medications.grannyh wrote:I worried about taking a synthetic steroid... however, Entocort EC has given me my life back!
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
I have no idea what the long term effects will be... but I do know I had no life at all before.
There was so little I could eat without problems before entocort and the experience of the Rita Evacuation led me to the decision to try entocort.. if we had had to go to a shelter I never would have survived... I would have dehydrated and died...
grannyh
There was so little I could eat without problems before entocort and the experience of the Rita Evacuation led me to the decision to try entocort.. if we had had to go to a shelter I never would have survived... I would have dehydrated and died...
grannyh
As you know, I was reluctant to take Entocort, but I started taking it four days ago, usual dose 3X in the morning. I haven't noticed any improvement yet, so I'm glad to read that it can take a couple of weeks to kick in. I was expecting to have some side effects like I had with Prednisone (took for an allergic reaction to a sulfa drug), but I haven't had any. I'm also doing the GF diet and will be submitting a specimen to Enterolab this week.
It took about two weeks for the Entocort to work for me.. My doc started me on three pills a day. The idea was for me to try to taper to one a day...I never was able to taper to one but then I am not on the gluten free diet. As far as I can remember.. mine is about the only gastro doc who started me on three most seem to start people on one. One a day never would have worked for me...
I did try Asacol, twice. Both times I was dizzy and terribly sick to my stomach and the pills went through me whole.. could see them in the toilet looking just as they did when I took them. I never did fish them out to see if the medication was still inside...LOL
When I had the OD on steroids for my back.. I continued to purchase the Entocort on my drug program even though I did not need them. I never want to be in a position where I may not have a supply on hand as I would have been had I been on entocort during the Rita Evacuation ordeal.
grannyh
I did try Asacol, twice. Both times I was dizzy and terribly sick to my stomach and the pills went through me whole.. could see them in the toilet looking just as they did when I took them. I never did fish them out to see if the medication was still inside...LOL
When I had the OD on steroids for my back.. I continued to purchase the Entocort on my drug program even though I did not need them. I never want to be in a position where I may not have a supply on hand as I would have been had I been on entocort during the Rita Evacuation ordeal.
grannyh
Hi Gloria,
Side effects from Entocort are not a problem for most people, though there are exceptions, of course. Like Pentasa, it's encapsulated, so that it doesn't become available to be absorbed, until it reaches the ilium, (the lower third of the small intestine), so it prevents the systemic effects of Prednisone, and therefore it prevents, (or at least minimizes), most of the unpleasant side effects that Prednisone is notorious for.
Sounds like you are on track with your treatment program, and I'll bet that you'll start seeing some improvement soon. Getting those tests from Enterolab is a very good idea, because many people start the GF diet, then wonder if they really need to be depriving themselves of all those familiar foods. The first few weeks on the diet can be very challenging, but it becomes easier with each passing week, until eventually it is second nature. This way, by getting the tests up front, there won't be any question about it. Typically, you'll have your results back in about two weeks or less.
Good luck with your program,
Tex
Side effects from Entocort are not a problem for most people, though there are exceptions, of course. Like Pentasa, it's encapsulated, so that it doesn't become available to be absorbed, until it reaches the ilium, (the lower third of the small intestine), so it prevents the systemic effects of Prednisone, and therefore it prevents, (or at least minimizes), most of the unpleasant side effects that Prednisone is notorious for.
Sounds like you are on track with your treatment program, and I'll bet that you'll start seeing some improvement soon. Getting those tests from Enterolab is a very good idea, because many people start the GF diet, then wonder if they really need to be depriving themselves of all those familiar foods. The first few weeks on the diet can be very challenging, but it becomes easier with each passing week, until eventually it is second nature. This way, by getting the tests up front, there won't be any question about it. Typically, you'll have your results back in about two weeks or less.
Good luck with your program,
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.
Joanna,
I think the jury is still out, on the nature of the risks of intestinal damage for people who are gluten sensitive, (but not celiacs), and who continue to ingest gluten, while controlling the inflammation with budesonide. No one seems interested in doing research on individuals who are in this category, (sensitive to gluten, but not celiacs).
Here is the big question in my mind: What about the celiacs who are asymptomatic? Some of them don't even show any evidence of villous atrophy, yet they test positive for celiac sprue, by serum antibody tests. If they continue to ingest gluten, do they fall under the 40 to 100% increased risk of GI cancer, just like symptomatic celiacs who are untreated? Conventional knowledge suggests that they do, but I wonder if anyone has ever actually verified this. IOW, my question is - why would there be any risk, if there are no symptoms. (Note that I'm not saying that no risk exists - I'm just playing the devil's advocate, here). When something is not working correctly, the body usually communicates this to us by means of symptoms, and no news is usually good news.
As non-celiacs, (well, most of us, anyway), presumably, the damage that accrues to our intestines from gluten, is of a different nature than the damage suffered by celiacs. We don't typically have villous atrophy, but that doesn't mean that our small intestines are not exposed to some type of damage. I don't recall seeing the mechanics of this type of damage defined in the literature, but I can tell you from experience, that my small intestine would writhe like a snake, sometimes, during reaction episodes, and three years after going GF, I still showed intestinal damage, with a fecal fat test at Enterolab. But the question is - does this put us at risk for dire consequences down the road, if we continue to ingest gluten. I can't find any evidence in the literature where this ever been documented, (nor can I find any evidence that it has ever been disproved.
Even if we are at risk, then logically, I would have to suggest that the nature of the risk would have to be linked to damage that accrues from long-term inflammation, (since inflammation on a microscopic basis is the diagnostic marker of MC). If the inflammation is controlled, (either by diet, or by meds), then why would there be any increased risk of subsequent dire consequences? If the meds only "masked" the symptoms, then, yes, the risk would still be there, but budesonide, (and the other corticosteroids), are claimed to control inflammation, not just mask it.
Therefore, over the years, I have changed my thinking to feel that, (with the use of budesonide, at least), if no symptoms are present, then the risk of long-term adverse consequences should be no worse than treatment by diet, (other than the risk of long-term side effects of the drug itself, of course). This is just my opinion, and I wish that someone would do the research to either verify or disprove it, but I have a hunch that will be a long time in coming.
That said, I have to add the disclaimer that it is always much safer to treat any disease by diet changes, than by the use of meds, simply because meds have so many side effects, and they seem to affect all of us differently. Meds are never without risk, whereas, as far as I'm aware, treatment by means of a "proper" diet avoids all the major risks that we are talking about here.
As always, I would definitely be interested in hearing other opinions on this, especially if someone is aware of research that contradicts anything I have written.
Love,
Tex
I think the jury is still out, on the nature of the risks of intestinal damage for people who are gluten sensitive, (but not celiacs), and who continue to ingest gluten, while controlling the inflammation with budesonide. No one seems interested in doing research on individuals who are in this category, (sensitive to gluten, but not celiacs).
Here is the big question in my mind: What about the celiacs who are asymptomatic? Some of them don't even show any evidence of villous atrophy, yet they test positive for celiac sprue, by serum antibody tests. If they continue to ingest gluten, do they fall under the 40 to 100% increased risk of GI cancer, just like symptomatic celiacs who are untreated? Conventional knowledge suggests that they do, but I wonder if anyone has ever actually verified this. IOW, my question is - why would there be any risk, if there are no symptoms. (Note that I'm not saying that no risk exists - I'm just playing the devil's advocate, here). When something is not working correctly, the body usually communicates this to us by means of symptoms, and no news is usually good news.
As non-celiacs, (well, most of us, anyway), presumably, the damage that accrues to our intestines from gluten, is of a different nature than the damage suffered by celiacs. We don't typically have villous atrophy, but that doesn't mean that our small intestines are not exposed to some type of damage. I don't recall seeing the mechanics of this type of damage defined in the literature, but I can tell you from experience, that my small intestine would writhe like a snake, sometimes, during reaction episodes, and three years after going GF, I still showed intestinal damage, with a fecal fat test at Enterolab. But the question is - does this put us at risk for dire consequences down the road, if we continue to ingest gluten. I can't find any evidence in the literature where this ever been documented, (nor can I find any evidence that it has ever been disproved.
Even if we are at risk, then logically, I would have to suggest that the nature of the risk would have to be linked to damage that accrues from long-term inflammation, (since inflammation on a microscopic basis is the diagnostic marker of MC). If the inflammation is controlled, (either by diet, or by meds), then why would there be any increased risk of subsequent dire consequences? If the meds only "masked" the symptoms, then, yes, the risk would still be there, but budesonide, (and the other corticosteroids), are claimed to control inflammation, not just mask it.
Therefore, over the years, I have changed my thinking to feel that, (with the use of budesonide, at least), if no symptoms are present, then the risk of long-term adverse consequences should be no worse than treatment by diet, (other than the risk of long-term side effects of the drug itself, of course). This is just my opinion, and I wish that someone would do the research to either verify or disprove it, but I have a hunch that will be a long time in coming.
That said, I have to add the disclaimer that it is always much safer to treat any disease by diet changes, than by the use of meds, simply because meds have so many side effects, and they seem to affect all of us differently. Meds are never without risk, whereas, as far as I'm aware, treatment by means of a "proper" diet avoids all the major risks that we are talking about here.
As always, I would definitely be interested in hearing other opinions on this, especially if someone is aware of research that contradicts anything I have written.
Love,
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.