Well folks, I have been doing really well since deciding to finally get a prescription - and thought I would share my experience in case it helps someone else in the future.
I avoided taking meds for years and years. We talked about my non-drug remedies here: http://www.perskyfarms.com/phpBB/viewtopic.php?p=27488
I began having fairly chronic "D" about 15 years ago, was diagnosed with MC in 2003. At that time, I did an Internet search, found the old MC site by Judy Malinowski - saying that a lot of people had improvement from the Pepto Bismal therapy by Dr. Fine.
I tried that, got better for about 6 months, but it didn't last (as many people discovered). I tried lots of elimination diets, did the Gluten testing by Dr. Fine, and frankly didn't notice improvement after stopping wheat / strict Gluten avoidance for 2 years. I just had a really, really bad case of MC and food became ammunition. No matter what I ate.
More recently, I tried the Specific Carbohydrate Diet (eliminating all grains, etc. per the book). After about 40 days I hadn't seen improvement - but did take a more active role in my diet, and learned a lot. I have a huge respect for those who have healed themselves by diet. I really wanted to do that - but was going through a 6 month flare-up that just wasn't going away.
I discovered this excellent site about 2 months ago - and really appreciated being able to see other's experiences with meds, and the "info for newbies" that the group, and Polly have put together.
I saw my MD, got a script for Asacol. I had read in the Med Literature that Asacol helps to extend a remission - but won't stop a flare up. And that was my experience, I tried it for 3 weeks (6 pills a day) and my "D" only improved briefly, then resumed full force.
I decided I needed something stronger -as I had classic symptoms of Malabsorbtion (fatigue, dry-cracking skin, thin nails, weight loss, etc.) After a lot of research, I decided to ask my MD for a script of Entocort.
I was amazed that my MD not only agreed, but that he wanted to put me on a short run of Prednisone FIRST.
I was given a script for 60 mg prednisone for 2 days, then 50 mg for 2 days, then 40 for 2 days, then 30 for days, then 20 - and also introducing 2 Entocort for 2 days. Then 10 mg Prednisone and 2 entocort for 2 days.
After that, I was off the Prednisone, and only doing the Entocort (2 pills a day) while maintaining Asacol at 6 pills a day (2 pills, 3x a day). (eventually stopped Asacol a few weeks later - because it wasn't doing anything but causing some nausea).
As I mentioned in an earlier post, my "D" stopped within 24 hours of starting the Prednisone. It was amazing. I had a lot of allergy symptoms going on that also halted. It is a strong anti-inflammatory, and we have an inflammatory bowel disease. After a horrific 6 month flare that was only getting worse - you cannot belief my amazement to have a formed stool the next morning, and only one BM. Unreal.
And I have not had "D" since then (3 weeks, and a couple days). I have seen posts by some other people that were put on Entocort. Some had great results, others grow impatient waiting for it to start working. I never thought I would say this (as I avoided meds for so long). But I really think the protocol of a SHORT run of Prednisone really set the stage for my success with Entocort. And as others have stated, Entocort is a comparatively "safe" steroid, because of it's delayed release (targeted for the bowels, not going into the blood stream to the whole body).
My MD voiced the same concept that other's have posted on this site - stay on the Entocort (for perhaps a couple months) then wean it down, and see if the Asacol will provide enough of an anti-inflammatory by itself. Then only go back to the Entocort as needed.
As far as diet, I remain completely off wheat based on the lab test from Dr. Fine. His test also found Casein (protein found in dairy) but I have gone on and off dairy over the years and really can't tell the difference. I don't drink milk, but do eat cheese.
I was on a strict "no grains" but was losing patience waiting for "some" improvement... After a couple weeks of normal stools (after the Pred -> Entocort protocol) I started eating rice again, and there was no worsening of my symptoms at all. And then I introduced corn, and did fine.
I have heard others on this site say that they "can eat just about anything" when they are on Entocort. I don't plan on testing that... and continue to strictly avoid all sugar, and processed food in general. Most restaurant food has had really bad effects on me over the years - and I am really reluctant to get into another MSG type fog (the food industry puts it in everything).
In the future, I will try Jean's excellent elimination diet (posted on this site) to test what I can tolerate - and try to maintain a remission without the Entocort.
Thank you all for your support, and excellent collection of knowledge on this condition. I want to especially thank Wayne (Tex) for carrying the torch, and creating this site from the ashes of some previous groups. You have helped a lot of people - very well done!
(update: still enjoying a remission about 4 months after starting this protocol... No "D").
Bobs Prednisone -> Entocort
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Hi Bob,
We really appreciate the kind words, but I have to say that you deserve all the credit for resolving your MC issues. You were obviously motivated when you came here, because in less than one month, you not only tried several types of treatments, but settled on a program that promptly resolved your symptoms.
It's very gratifying to know that we were able to provide some inspiration that helped you to find your solution. Yours is the type of success story that makes us feel like a million bucks. We're very proud that you chose to allow us to share in your recovery.
By the same token, we appreciate your demonstrating to us how a concerted approach, (diet plus potent meds), can bring dramatic results. We all hope that your remission will last forever.
Tex
We really appreciate the kind words, but I have to say that you deserve all the credit for resolving your MC issues. You were obviously motivated when you came here, because in less than one month, you not only tried several types of treatments, but settled on a program that promptly resolved your symptoms.
It's very gratifying to know that we were able to provide some inspiration that helped you to find your solution. Yours is the type of success story that makes us feel like a million bucks. We're very proud that you chose to allow us to share in your recovery.
By the same token, we appreciate your demonstrating to us how a concerted approach, (diet plus potent meds), can bring dramatic results. We all hope that your remission will last forever.
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.
I am thrilled to hear about your success and what a total relief it must be to you be rid of the BIG D at last!!!!
I am maintaining on 4 Asacol a day and am considering cutting it down more. Still struggling with my diet but 60 + year old habits are hard to break.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Bob,
Thank you so much for taking the time to post your experience in detail. I believe you are the first one here to use this specific approach, and it may well be that others should to consider it in the future.....especially those who may have been suffering for years as you had.
As a physician, I believe it makes so much sense to "hit" a refractory, longstanding MC initially as you did - with prednisone. I have great respect for that drug, and some here have had horrible experiences with using it longterm (check out Sally's experience in this same forum), but to use it powerfuuly and quickly and then move immediately to Entocort is a stroke of genius. Hooray for your doc! I fully agree with you. With longstanding damage to the gut, so many "lesser guns" like Entocort, Asacol, and diet will be ineffective until the major inflammation is under control. In fact it is totally impossible to do an elimination diet when you are having D every day. How would you even know if something was affecting you if all you have is D every day??? LOL!
Now, for the true test of your success..........are you able yet to understand the truth of this saying of ours?..................
"Happiness in a dry fart!!"
Love,
Polly
Thank you so much for taking the time to post your experience in detail. I believe you are the first one here to use this specific approach, and it may well be that others should to consider it in the future.....especially those who may have been suffering for years as you had.
As a physician, I believe it makes so much sense to "hit" a refractory, longstanding MC initially as you did - with prednisone. I have great respect for that drug, and some here have had horrible experiences with using it longterm (check out Sally's experience in this same forum), but to use it powerfuuly and quickly and then move immediately to Entocort is a stroke of genius. Hooray for your doc! I fully agree with you. With longstanding damage to the gut, so many "lesser guns" like Entocort, Asacol, and diet will be ineffective until the major inflammation is under control. In fact it is totally impossible to do an elimination diet when you are having D every day. How would you even know if something was affecting you if all you have is D every day??? LOL!
Now, for the true test of your success..........are you able yet to understand the truth of this saying of ours?..................
"Happiness in a dry fart!!"
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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bobh
- Gentoo Penguin
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- Joined: Wed Aug 09, 2006 10:07 am
- Location: California, San Luis Obispo (coast)
Bob's Meds - finally got relief!
Well, maybe I was the first one with that specific dose tapering the Prednisone to Entocort, but I read a post prior to that Dr. visit where Joanna (Harvest Table) stated this:Polly wrote:...I believe you are the first one here to use this specific approach... As a physician, I believe it makes so much sense to "hit" a refractory, longstanding MC initially as you did - with prednisone. Love, Polly
I don't know how much time elapsed (if any) between taking her Prednisone, and starting the Entocort.Harvest Table wrote:...I found relief with a short term round of Pred and then tried Entocort/ along with diet for 6 months. I believe the medication allowed my gut to heal which then in turn allowed my diet to take over. I'm GF and eat close to a Paleo Diet.
I didn't mention her experience to my MD, but armed with that information that it helped her, it was easy for me to agree when he suggested the protocol. If it wasn't for this site, and brainstorming with others who have a similar issue, I would have had "objections" to taking a stronger steroid like Prednisone.
But it worked GREAT, and the very next morning after the first day on Prednisone I had several dry farts, followed by a NORMAL BM.
We are talking about a Night-> Day difference. I have read that the average person passes gas 10 times in 24 hours. With my 6 month flair, it was worse due to shortened transit time, and the "urgency" associated with inflammation and "any" pressure from GAS was very, very strong.
So when I woke up the next morning with a dry fart, and a formed stool - it was just like magic. And I haven't had a single episode of "D" since, and it has been 3 1/2 weeks. I have been fully off the Prednisone for over 2 weeks, just coasting along on the entocort 2x a day, and Asacol 6 pills a day.
As stated previously, I hope to wind down to just Asacol, my MD said to stay on the Entocort for at least 2 months though, to ensure things are stable. I remain Gluten Free, and basically preparing all of my own food.
"Happiness is a dry fart!!"
Bob H
It's a shame we aren't all rebellious kids, 'cause that appears to be a phrase that would certainly be appropriate for the backs of those T shirts. Hahahahahaha."Happiness is a dry fart!!"
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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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hey there.
I couldn't recall the amount of time that elasped between my Pred round and when I started the Entocort/Diet so I went back into Sally's site to piece it back together from reading old posts. My old password still worked and it was a fun walk through memory lane!
Looks like I took the round of Pred for 6 weeks- towards the end of that wean off D symptoms and muscle and joint pain slowly began returning and based on what I can put together there was at least a 3 week period before I started the Entocort/Diet. My symptoms were obviously flaring again after stopping the Pred. because I was using Lomotil 2 times a day a few weeks.
Bob, it's so great to hear your feeling better and thanks for your contribution to the group. Please keep us updated.
Speaking of the joy of Dry Fart's! Sorry friends.... I just couldn't resist reviving this old post from Sally's board
http://forum.microscopiccolitis.org/cgi ... sage_Board
Love,
Joanna
I couldn't recall the amount of time that elasped between my Pred round and when I started the Entocort/Diet so I went back into Sally's site to piece it back together from reading old posts. My old password still worked and it was a fun walk through memory lane!
Looks like I took the round of Pred for 6 weeks- towards the end of that wean off D symptoms and muscle and joint pain slowly began returning and based on what I can put together there was at least a 3 week period before I started the Entocort/Diet. My symptoms were obviously flaring again after stopping the Pred. because I was using Lomotil 2 times a day a few weeks.
Bob, it's so great to hear your feeling better and thanks for your contribution to the group. Please keep us updated.
Speaking of the joy of Dry Fart's! Sorry friends.... I just couldn't resist reviving this old post from Sally's board
http://forum.microscopiccolitis.org/cgi ... sage_Board
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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bobh
- Gentoo Penguin
- Posts: 253
- Joined: Wed Aug 09, 2006 10:07 am
- Location: California, San Luis Obispo (coast)
Bob
Ya know, a guy tries to make a respectable post... And what do you folks do with it? (LOL, just kidding).
Seriously, I am continuing to "enjoy" dry farts since the protocol described above (short run on Prednisone -> shifting to Entocort).
It's been over a full month, still doing good. Prior to the first day on Prednisone, I had over 6 months of a scenario where ANY gas resulted in a run to the toilet, because there was nothing "dry" about that fart. I continue to avoid any forms of Gluten and appear to be tolerating other foods.
Seriously, I am continuing to "enjoy" dry farts since the protocol described above (short run on Prednisone -> shifting to Entocort).
It's been over a full month, still doing good. Prior to the first day on Prednisone, I had over 6 months of a scenario where ANY gas resulted in a run to the toilet, because there was nothing "dry" about that fart. I continue to avoid any forms of Gluten and appear to be tolerating other foods.
Bob H
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bobh
- Gentoo Penguin
- Posts: 253
- Joined: Wed Aug 09, 2006 10:07 am
- Location: California, San Luis Obispo (coast)
Here's an update: More time has passed, and I am still doing great, just on 2 Entocort a day (after a short-hard hit with Prednisone to HALT the inflammation, then switch over to Entocort, as described at the top of this thread). My MD told me to stop taking the Asacol after about 45 days, it was causing some nausea. When I stopped it, there was no change in my recovery. Seemed the Asacol wasn't doing much (for me).
If I felt like I could stop Entocort and stay in remission, I would do that. It's only been 3 months into remission, and every few days I can tell that my inflammatory condition is "simmering" in my lower colon - but the Entocort keeps it from going to full-blown "D".
I feel like if I stopped the Entocort at this moment, the "D" would return within 2 weeks. Right now, I have had "dry farts" for 3 months, and that is important when you consider that the average human passes gas 15 times in a 24 hour period.
After another 3 months, I may "test" no meds. I'm not saying Entocort has to be taken forever, and likely it is a case-by-case thing.
If I felt like I could stop Entocort and stay in remission, I would do that. It's only been 3 months into remission, and every few days I can tell that my inflammatory condition is "simmering" in my lower colon - but the Entocort keeps it from going to full-blown "D".
I feel like if I stopped the Entocort at this moment, the "D" would return within 2 weeks. Right now, I have had "dry farts" for 3 months, and that is important when you consider that the average human passes gas 15 times in a 24 hour period.
After another 3 months, I may "test" no meds. I'm not saying Entocort has to be taken forever, and likely it is a case-by-case thing.
Bob H
Glad to hear you can get by on 2 entocort a day... I tried to reduce from 3 with no luck at all.
After a remission from an overdose of prednisone for back pain... it took awhile for the entocort to kick in again.. at least it worked the second time I had to start it up.
I am not sure I will ever be able to get off the entocort.. but it sure beats the alternative:)
grannyh
After a remission from an overdose of prednisone for back pain... it took awhile for the entocort to kick in again.. at least it worked the second time I had to start it up.
I am not sure I will ever be able to get off the entocort.. but it sure beats the alternative:)
grannyh