Prednisone Trial/Entocort Questions

Courtney · Post by **Courtney** » Mon Jun 01, 2009 8:32 am

Good morning, everyone.

I have not posted much in the last few weeks because I have had a lot going on (moved to new house, finished up school year, DH started new job...it's been a busy month). Also, I was down for about a week with a terrible toothache, so I was unable to do much but hold an ice pack to my cheek and moan. I think I mentioned a couple of months ago that my teeth have been one victim of the celiac/MC issue. I had one capped in March and have slowly been working on getting cavities filled. (I always feel very defensive at the dentist bc they seem to blame me--and I do brush!

)

Anyway, the pain was in the bottom right side, and it seemed to move around, from cheekbone to jaw to tooth to gum, and I had a lot of trouble pinpointing it. It had hurt off and on for about six weeks, when I went in to have them look at it again. Turns out that the bite was off--so I had to go in three times last week to get it filed down. After the filing, it started hurting all the time. Tylenol helped, but it only masked the pain, and I took the maximum dose for about six days. The dentist told me to take an NSAID to help with inflammation, but I was not about to do that. I still had the prednisone prescription from my GI, but I had chickened out about getting it filled, due to my fear of side effects. I figured that if I took the prednisone with the Tylenol, that should help with both inflammation and pain.

I took the first 40 mg dose last Monday night (May 25th) and should finish up with a 10mg dose tonight. The prednisone worked wonders for my tooth pain (I have taken a small dose of Tylenol only twice in the past week), and it has helped the MC somewhat, I think. I know that at least a couple of others have had great success taking prednisone and then moving immediately to Entocort, but it seems to me that those people had rather immediate success on prednisone. I have not seen Norman yet, but the volume of D has gone down dramatically, suggesting to me that perhaps the prednisone has stopped some of the secretory D. Also, the watery consistency is mostly gone, and I have moved into the land of softserve

.

I am now debating with myself whether or not I should give Entocort another try. As you may recall, I did 9mg a day for two months last fall with no change. However, at that time I had only been GF for about two months, and I was still eating casein, soy, and a number of other things I'm sure are intolerances. I'm just wondering if it's worth trying again, since it had no effect on me the first time. I guess I am trying to figure out if being on Entocort for awhile would actually help with healing, or if it would just mask the symptoms and the MC would come back when I went off of it, if I still hadn't figured out all of my intolerances. Not having the symptoms would be great, but I'm at the point now where I don't mind toiling along and figuring out my intolerances, if that's what I need to do for longterm health. The D is manageable--not great--but not completely debilitating anymore, either. I'll keep thinking about it, and I'd be interested to hear any of your thoughts.

I know that I have missed greeting a lot of newbies. Welcome! I see that you've all jumped right in, and that's the best way to learn. I look forward to talking with you.

Enjoy your Monday, everyone.

Courtney

RUBYREDDOG · Post by **RUBYREDDOG** » Mon Jun 01, 2009 12:27 pm

Courtney, You posted an interesting question. One that I struggled with for 6 months. Should I try Entocort or continue on with mild symptoms and try to figure out my remaining food irritants?????

I finally went on Entocort 5 weeks ago and am down to 6 mg/day and doing great. I am so glad to be back to normal with all of my bm activity. ( I tried Prednisone for 3 weeks right after my mc diagnosis but it had no effect and I was having some muscle cramping type side effects) Having said all that, I still am apprehensive that once I completely wean off Entocort, my symptoms will return. Gloria and others have experienced this occurence.

I think that the fact that Entocort does not actually "heal" the gut inflammation (this has been a topic of past discussion) is discouraging for me. I have read that Corticosteroids are not safe to take long term (maintenance basis). My hope is that my gut will heal enough in the next few months so that I will not need to take Entocort or one of the 5-asa drugs for maintenance purposes.

Its a tough decision. Especially since you state that your symptoms are manageable. I was in a similar position for 6 months and chose to try Entocort finally. Hopefully others will relate their experiences and you can feel comfortable with which ever way you go. Good luck and keep us informed as to your progress.

Hotrod

Post by **tex** » Mon Jun 01, 2009 1:01 pm

Hi Courtney,

I hear you. Gluten launched an all-out attack on my teeth, too, before I managed to get it's effects out of my system.

Okay, here's my two cents worth on Entocort, (if it's even worth that much):

Hotrod pretty well summed up the "pros and cons", and the deep-down concerns about taking corticosteroids, in general. I think it's worth pointing out that all the dire warnings about long-term use of corticosteroids are worthy of consideration, because the pharmacodynamic "potential" may ultimately be similar, but remember that those warnings are based on "conventional" corticosteroids, all of which are highly systemic, in their pharmacokinetics. (Pharmacodynamics relates to what a drug does to the body, whereas pharmacokinetics relates to what the body does to the drug). IOW, the pharmacokinetics of Entocort EC, (theortetically, at least), should prevent budesonide from attaining it's true pharmacodynamic potential, (on most of the body outside of the ileum and the colon).

Do you see what I'm trying to say? Budesonide has virtually the same pharmacodynamic potential as any other corticosteroid, but the pharmacokinetics of Entocort EC are vastly different from all the other corticosteroids.

If Entocort didn't cause any problems the previous time, I think I would give it a try, and I would probably do it immediately, before the effects of the residual Prednisone fades away - that should help to kick-start the treatment.

As Dr. Fine points out, corticosteroids don't appear to eliminate the inflammation, but on the other hand, I don't believe that they are likely to make it worse, either, and Entocort can certainly make life easier, when it works. With the "beefed up" diet that you are now on, the combination might prove to be much more effective, this time around.

Good luck, whatever you decide to do.

Love,
Tex

Gloria · Post by **Gloria** » Mon Jun 01, 2009 8:00 pm

Courtney,
I was on Entocort for 4 weeks before it had any effect. I only was GF at that time. I believe that I had gotten my Enterolab tests at about the 2nd week of being on Entocort and immediately went SF, EF, DF and yeast-free. I don't know if Entocort would have had an effect had I not also eliminated those other intolerances.

As Hotrod mentioned, I resume having problems 5 weeks after getting completely off Entocort and they aren't minimal problems. My symptoms are identical to what they were before I went on Entocort or changed my diet. This has happened to me both times that I've gone off Entocort and the pattern and time frame have been the same.

I wish I could tell you that I know why I relapse after 5 weeks, but it's a mystery to me. I suspect that I'm eating too much fiber and am irritating my gut over a period of time. I gradually decline for a couple of weeks before I completely lose control. When I ate foods to which I'm intolerant, my reactions were pretty immediate - within a day - and I got back to normal once I stopped eating them.

The good thing is that once I go back on Entocort, I only need to be on 2 pills a day for ten days before having normal BMs. I just went back down to 1 pill a day (after taking 2 a day for two weeks) and will probably go down to one pill every other day in a month.

I must emphasize that I'm a genetic double DQ1 and have numerous intolerances and irritants. I'm not the typical MCer.

If I were you, I'd go back on Entocort. You will probably find, like Hotrod did, that it works very quickly because you've eliminated your major intolerances. You should be able to reduce to 2 pills within a short time. I didn't find any additional intolerances besides the ones Enterolab identified until I was on 2 pills a day.

There have been a few other people who have maintained remission after they've gone off Entocort. Unfortunately, they no longer post. Perhaps the veterans here will be able to give their names and we can look up their earlier posts.

Gloria

Courtney · Post by **Courtney** » Mon Jun 01, 2009 9:10 pm

Good thoughts all. I appreciate your input. I guess my main concern is that if I go back on Entocort, I won't be able to figure out any other intolerances, because the Entocort will mask reactions. Then, when I try to wean off, I will be right back where I started with figuring out intolerances. Does that make sense? Does the Entocort actually move you any further down the road toward remission?

Courtney

Gloria · Post by **Gloria** » Mon Jun 01, 2009 9:55 pm

That's a good question. It helped me figure out additional intolerances/irritants, most of which I don't think I'd ever have discovered without it. I think if I didn't have so many, it would have been easier to do. I'm going to list all of the irritants/intolerances that I've determined thus far:

Intolerances - gluten, eggs, oats, dairy, legumes: peanuts, soy, peas, all beans including green beans

Irritants or intolerances (don't know yet): carrots, sweet potatoes, oranges, all fresh fruits, many canned fruits, all fresh vegetables, Hemp milk, Rice Dream milk, sun-dried tomatoes, onions, red and green peppers, salads, spinach, cashews (avoiding all nuts right now), parsley, chives, corn. Notice that almost all of these items are high in fiber. I'm also switching to lower fiber flours.

The only way I would have been able to determine this many intolerances/irritants would have been to go on an elimination diet, and that would have taken major sacrifice for a long time. I don't even think that the Paleo diet would have helped because many of my intolerances/irritants are allowable on that diet. Each time I find a new one, I think I'm done, but I'm not.

I'm not sure how many foods that you've eliminated or how easy it is for you to determine if a food is bothering you. We don't know until we finally figure it out. Hindsight is always easy, but when you're in the midst of the problem, it can be vexing.

Gloria

Post by **tex** » Tue Jun 02, 2009 1:28 am

Gloria wrote:There have been a few other people who have maintained remission after they've gone off Entocort. Unfortunately, they no longer post. Perhaps the veterans here will be able to give their names and we can look up their earlier posts.

One is Joanna. I'll have to think for a while to come up with any more names.

Tex

Courtney · Post by **Courtney** » Tue Jun 02, 2009 1:27 pm

Hi Gloria,

I've eliminated many of the same foods as you. My results from Enterolab say that I'm intolerant to gluten, casein, and soy. My egg and yeast levels were borderline (egg=9 and yeast=8, with 10 or higher indicating intolerance), so I am avoiding those for at least a year, as suggested. I'm also avoiding all legumes, given the relationship to soy and the fact that legumes tend to irritate a healthy gut. I have also eliminated corn and all foods in the onion family.

I have determined reactions to the following foods that make the D worse than usual: canned tuna (even the kind that specifically says it is SF), sweet potatoes, sorghum flour, citrus fruits, tomatoes, red and green peppers, coffee with any sort of flavoring, any sort of lettuce or leafy green vegetable. Anything high fiber is a problem, of course.

I think I will go back on Entocort and see if I have better results this time. Fortunately, when DH started his new job, he put part of his salary in a medical expenses fund that we have to use or lose by the end of the year, so I don't feel so bad about the cost this time.

Thanks for your help.

Courtney

Courtney · Post by **Courtney** » Tue Jun 02, 2009 9:12 pm

One more question for Gloria: You say that Entocort helped you figure out your intolerances. How? Did you still react to intolerances/irritants while on it? I'm just wondering what to look for.

I took my final dose of prednisone today and will start 9mg of Entocort in the morning. I've decided to give it another shot. I will keep you all posted.

Courtney

RUBYREDDOG · Post by **RUBYREDDOG** » Wed Jun 03, 2009 12:15 pm

Courtney, I think you made a wise choice to go back on Entocort. In my case, it is so nice to bring some normalcy back into my life. We always say that we want our lives back, because of the lifestyle changes MC brings, and Entocort has done that for me. I know that it is only temporary and that I still have a lot of work ahead to achieve remission, but for now, I'm going to enjoy the freedom from worry about the dreaded "D" issue.

One thought I had: Have you checked your vitamins and supplements for your intolerances? I know that mine had a few and now I have totally eliminated those from my diet. Soy seemed to be hidden in many of the vitamin E and fish oils that I checked. Now, I don't take anything unless it specafically states that my intolerances are not present, on the bottle.

Hotrod

Gloria · Post by **Gloria** » Wed Jun 03, 2009 10:29 pm

Courtney,
Entocort helped me find my most grievous intolerances (other than the ones Enterolab identified), which were all legumes. I would react with pudding D after I ate them. Since there are so many legumes, I didn't see a pattern until I'd been on Entocort for about 10 months.

On Entocort my reactions aren't watery D, but either pudding D or cloudy water when flushing. Sorry to be so graphic, but that's always what I look for. I feel like every BM is a test that I'm hoping to pass. LOL. I consider that I've passed the test when I have a perfect Norman - no cloudiness or very little when I flush. I have other physical reactions: mouth sores, pressure or a feeling that I have to go all day. I've never had cramps or stomach pain, but I do get gurgling and gas.

I always review my food diary, looking for a reaction pattern in what I eat regularly. It sounds like I've mastered this, but I can assure you that I haven't. I'm guessing all the way and keep hoping that I've found the last of my problems.

I have not seen any improvement in my symptoms due to changing my diet when I've been off Entocort. It's D all day, every day, but admittedly I don't wait very long before I go back on it. If Entocort keeps it under control while I try to figure it out again, then that's what I'll use.

Hotrod,
You bring up a good point. I haven't checked any of my prescription medications. I get them via prescription mail order, so I can't talk to a pharmacist. I can try to send an email to the company. I'm pretty confident about my supplements because the bottles specifically state that their free of my intolerances. Nonetheless, it would probably be a good idea to write the manufacturers.

Gloria

Courtney · Post by **Courtney** » Thu Jun 04, 2009 8:10 pm

As you'll see from my post on the main board, Entocort caused terrible side effects for me this time, so I guess this is sort of a moot point. Thanks again for all of your suggestions and advice.

I guess it is back to the old food diary. I am determined to be very disciplined about it this time around. I am writing down every ingredient and noting when reactions are worse than usual.

Courtney

grannyh · Post by **grannyh** » Fri Jun 05, 2009 12:08 pm

Altough the doctor said it didn't matter if I took all three entocort at the same time or spaced them out.. it made sense to me to space them out at meal times. Now that I only take one a day I take it in the morning before eating anything.

My GI doc says entocort is a remission maintenance drug not one you take for awhile and stop although he has no problem with me experimenting with how much I take or how often. There is no sure way to take it that will work for everyone 100% of the time.

I metabolize drugs slowly and if I had started the entocort again right after the steroid overdose (prescribed for back pain) I could have had a major problem with blood pressure again. I waited til the D came back and started the entocort:)

Without insurance I don't know how people can afford entocort in the US when I see what the retail price is. For a drug that is so effective it is a shame! My doctor says he will and has fought insurance companies when they try to reduce his prescriptions from 3 a day to one when it is seen that the prescription isn't being filled monthly. The problem for patients is that they never know when they WILL need to take 3 day and if the drug plan limits the prescription they would use up their supply in 10 days. He has never lost an argument about prescription dosage yet.. with an insurance company.. thank heavens!
granny.

Post by **tex** » Fri Jun 05, 2009 2:16 pm

grannyh wrote:My GI doc says entocort is a remission maintenance drug not one you take for awhile and stop

Kudos to your doc. Most GI docs have exactly the opposite opinion, (shame on them - they don't know the difference between Prednisone and Entocort). Your doc definitely sounds like a winner.

Tex

grannyh · Post by **grannyh** » Fri Jun 05, 2009 5:30 pm

Have had the current GI doc since 2004. He actually went to the hospital and viewed the slides from my colonoscopy. He studied under the doctor who diagnosed me. When I asked a couple of years ago he had 10 patients with LC and CC. All of his patients are in remission with one drug or another. He starts with Asacol and then Entocort.. if neither works it is on to some serious drugs with long names I can't remember which have many side effects.
grannyh