Long Term Entocort?

[Kitty]

I am wondering, now that I am starting to see some results from the Entocort in combination with Asacol, how long can I take it? It looks like most people see thier symptoms return when they stop Entocort. It this true? Is anyone on it long term?

[tex]

Hi Kitty,

I believe you are correct, that for most people with MC, the symptoms usually return soon after ending treatment with Entocort. Most doctors still believe that MC can be "cured", when in fact, it cannot, at least not by currently technology, so treatment must be continued indefinitely, either by medication or by diet, (or by a combination), if remission is to be maintained in the long term.

The trials that I have seen, have indicated that Entocort is generally safe for long term use, especially at reduced, (maintenance), dosages. I believe that there are a number of members here who have been taking Entocort as a maintenance medication for years, with no ill effects. Hopefully, some of them will respond to your post.

Tex

[barbaranoela]

Kitty-----I am one that could not take the Entocort--on my 2nd day of using it I developed neurological issues----so I had to stop IMMEDIATELY

Colazal was what kept my inners in *tune*--and now am taking nothing--


Barbara

[starfire]

Kitty, I believe that if you were taking Entocort alone your statement would be true about symptoms returning after ending the med.

However, if you are also taking Asacol then you can probably taper off the Entocort and maintain on Asacol. That's assuming the Asacol works for you. I don't think Asacol is a good med by itself for initial treatment but it can be a good maintaince treatment for some people. That's what I use.

If you end up staying on the Entocort for a maintenance treatment, then why take the Asacol at all...... Just my thoughts.

Love, Shirley

[Umber]

I took Entocort for a couple of years. I was on the lowest dose. I was one to sing its praises. I have been off of it for about as many years as I took it. My experience since getting off of it not good. I suffer from adrenal fatigue & thyroid problems. I can't say for sure that Entocort alone fried my adrenals but I suspect it contributed. It is a long drawn out process to heal your adrenal system (4+) years and NOT fun. Just my two cents. I would certainly talk to your doc about it and see if you should include an adrenal boosting supplement if you decide to take Entocort.

Hugs!

Lori

[tex]

I have to agree with Shirley. If you are going to continue with the Asacol, it might be sufficient, after the Entocort puts you into remission. If you've been through this before, though, (with Entocort), and the Asacol didn't maintain remission, then the odds don't look good. Just because Asacol didn't work by itself, though, is no guarantee that it won't allow you to maintain remission, once you achieve remission.

Tex

[hazel]

My neighbor who has Chron's Disease, or Ulcerative Colitis, I don't remember, takes 12 Asacol a day to maintain his remission. This has been for several years.

[starfire]

I'm maintaining on 4 a day but I think I could cut it down some more and just go back to 4 per day if stools get too soft. I take 2 AM and 2 PM.

Just throwing out whatever might seem to help.

Love, Shirley

[MaggieRedwings]

Have been on Entocort since last July and now take 3 mg. every other day and it is helping somewhat. I really have not found the right thing to have Norman visit but still plugging away at it. I was up to 12 Asacol per day and felt it did nothing for me.

Just throwing in my 2 cents worth.

Love, Maggie

[Kitty]

This was very helpful. I have maintained remission on Asacol before. I actually weaned off asacol but had a relapse after about 3 months. It seems what has happened is that the Asacol has not put me in remission so he tried a round of prednisone and now this. So it sounds like I have a good shot of the Entocort helping me go into remission and maintaining on Asacol. This second time around sure has been more difficult. Thanks for sharing yor experience with these meds.

[tex]

Kitty,

Others here have found the same thing - if you stop using the Asacol, the symptoms will return after a few months, and then it is harder to achieve remission the next time around. The best policy seems to be to never stop using it, just cut the dosage down to a maintenance level, and continue using it that way.

Tex

[barbiem]

can anyone explain why mornings are my worst - I have had lymphocytic colitis now since January - went on 9 mgs of entocort once per day (take at lunch) and after a month there was no change so they took me off it. I went on the SCD diet and went thru major die off, had hives and also have candida. I went down to very low weight and decided to try entocort again end of May since being on new diet. It finally worked, not completely, but down to 4 BMS in the morning. This went on for a bit and then finally started to have only 2 BMS a day and put weight on (10 lbs) so they weaned me down to 2 a day for a month but after 3 weeks and adding in eggs I flared back and went back to 9 mgs of entocort since august and was a bit better. then went on FODMAPS diet and removed broccoli, cauliflower, asparagus and down to 1 BM a day. But I can`t add in any foods - whenever I do I get a flare!!!! I have lost weight again being on fodmaps and scd because I had to stop avacados (my only source of fat). I am soooo skinny. I did try adding in amaraneth flour and brown rice flour only to get a flare that is back to 5 bms a day. so I stopped and am feeling better a week later. I have also added in sweet potoatoes and were fine but once I find a food I love and works I start to eat too much of it and then flare again! Why do we become intolerant to foods if we eat them too often?? I just don't get it!! Also, one more question: is it best to maybe scatter the entocort throught the day instead of taking all at once like I was told?? thxs everyone for any input!!

Barb

[tex]

Hi Barb,

Mornings are the worst for almost all of us. After a night of inactivity, it's not surprising that once we begin moving around as we start a new day (and our cortisol level is at a high for the day), our gut is going to become active, also.

Sorry that you're still limited to such a restricted diet. My guess is that you are trying to add foods back into your diet too soon. Your gut needs to do some serious healing before it's safe to try to add foods back in. Of course we are all different, but back when I was recovering, it took a year and a half before I was able to successfully add any foods back into my diet.

Regarding the flour you tried — not many here have been able to tolerate amaranth flour, if they were sensitive to quite a few foods. And brown rice flour has way too much fiber for most of us. Until you have been in remission for a year or so, always choose white rice anytime you try rice.

If/when we become intolerant to a food that we have been eating for a while, it's because we are sensitive to the food right off the bat, but it takes a while for the body to build up an antibody level that is above the threshold at which a reaction is triggered. As a result, the food seems to be OK at first, but suddenly it becomes a problem. The amount of time involved usually depends on the level of prolamin proteins that the food contains. The higher the protein level, the faster we can develop a sensitivity. For example, eating oats only twice a week, it took me 6 weeks to develop a sensitivity to it that triggered D. If I had been eating it every day, I would guess that it probably would have taken less than 2 weeks for the reaction to begin.

Conversely, if we are not sensitive to a food, then it's not likely that we will ever begin to react to it, no matter how often we eat it.

Research shows that corticosteroids in general (including budesonide) are most effective if the complete daily dosage is taken at one time. Here is a more detailed explanation of that, from page 59 of my book:

Research shows that Entocort EC is almost 50 % more effective at bringing remission within a given time interval if it is taken the same way that all corticosteroids are intended to be administered — namely, the full daily dose should be taken at one time each day. It's usually better to do this first thing in the morning, simply because the drug is less likely to interfere with sleep this way. But the actual timing may not be critical to effectiveness.

One reason why taking the full daily dose at one time each day works better for many patients is because corticosteroids supplement (and at least partially replace) the cortisol that is naturally supplied by the adrenal glands. The cortisol level for most people usually peaks in the mornings about 30 minutes after awakening and declines for the rest of the day. Corticosteroids seem to be most effective at suppressing inflammatory effects if they are utilized in a similar manner that provides the full dose at one time during the day. This may provide a type of “shock” effect, that is then allowed to decay for the rest of the day. Taking the medication this way has been substantiated by research to show that doing so is more effective than providing the same total amount of medication in split doses at multiple times during the day.2

And here is reference number 2, from that quote:

2. Campieri, M.., Ferguson, A., Doe, W., Persson, T., Nilsson, L. G., & the Global Budesonide Study Group. (1997). Oral budesonide is as effective as oral prednisolone in active Crohn’s disease. Gut, 41(1), 209–214. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/article ... p00209.pdf

Tex

[barbiem]

THanks so much for the awesome info!! I took 3 this morning for the first time ever and will see if that changes anything! Because mornings are sooo bad is it best to not eat right away like for a few hours?? Also is it better to take entocort with food or without?? You mention white rice but if I have yeast issues will that contribute to it due to it converting to sugar in the body??

So what you are saying is if I am not intolerant to a food at all I should be able to eat it regularly without developing an intolerance to it ever? Also, my diet consists of just chicken (organic hormone/antibiotic free) bison (same) and beef (same) and green beans and steamed carrots. Was eating my SCD yogurt 3 x a day and now it is causing me problems. What's funny is a get an immediate little bump on my gums when I eat certain foods - the yogurt and the nut butter muffins but usually only in the morning. When I go to eat them in the evening or late afternoon they don't bother me at all. This is why I am sooo frustrated and confused. why one minute I can eat them and the next I can't and it is usually the morning that is when the bothering occurs!!! SOOOO FRUSTRATING AND I AM STARVING AND SKINNY!!! LOL

So do I just eat meat and veggies 3 x a day for months until symptom free while on entocort?? There is no fat in there and I notice when I stop eating the nut butter muffins or yogurt or avocado I get severe heart pounding for hours on end and palpitations. I link that to not enough fats in my diet? I could be wrong but it sure seems that way to me.

I sure would love to cook with white rice flour though!!! the recipes would be endless and I would possibly get out of this major depression I am in having no success with foods ! :(

did you find rotating your food instead of eating the same thing daily helped more? Also what about prednisone for just a week to kick start the system and then back on to entocort.?? or LDN?? I really just want to eat again :( - I believe mentally I am not a strong person to handle this diet stuff - very very depressing and I cry a lot.

[tex]

Babs,

Apparently Entocort can be taken either on an empty stomach, or after a meal. I get the impression that many members here take it before breakfast.

Yes, any kind of rice may be contraindicated if you are trying to starve a Candida overgrowth. I was simply pointing out that anyone who eats rice should avoid brown rice until after they have healed a bit, because of the fiber. If you are trying to starve Candida it will be necessary to avoid/minimize carbohydrates for months.

Without carbs, you may need to add some fat to your diet (eat fatty meat). Otherwise, you run the risk of developing what is known as rabbit starvation, which can cause diarrhea, dehydration, etc. It's possible to live safely (and healthily) on meat alone, but it must be fatty meat. Otherwise, a steady diet of lean meat (only) can actually lead to a life-threatening condition (rabbit starvation).

There are always exceptions to every rule, but basically, safe foods should remain safe (unless some new issue comes along to alter our genes).

That bump on your gums, and the heart pounding, and palpitations issues are strong indicators of a mast cell reaction. You are allergic to the foods that cause those symptoms. Taking an antihistamine can reduce the symptoms, but the most practical solution is to avoid the foods that cause such reactions.

Are you taking an antihistamine? If you are, that might explain why you get symptoms at certain times of the day, and not at others (IOW, the effects of the antihistamine might wear off at certain times of the day). There are also natural antihistamines, and certain drugs (such as tricyclic antidepressants) that are very powerful antihistamines. Any of these could be affecting (minimizing) your reaction pattern.

The only food I ever rotated in my diet was oats, and I became sensitive to it after 6 weeks. Basically, I eat the same foods virtually every day. I have a very limited diet. I eat pork, eggs, potatoes, and corn (about 90 % of the time), and occasionally rice, chicken, or fish. When I was recovering I had to avoid corn, but now it works OK.

A few members have used a short regimen of prednisone to shock the immune system into inducing remission, but prednisone cannot reverse any food sensitivities — like budesonide, it can only mask the symptoms of food sensitivities. And all of the corticosteroids actually slow down healing. Many people (even a few doctors) believe that they speed up healing, but that's not the case. They simply mask the symptoms, to make us feel as though we are healing.

So far, I'm aware of only 1 or 2 members who have actually had success with LDN helping to bring remission.

If depression is a major problem for you, you may want to consider asking your PCP for an antidepressant. Most antidepressants have a track record of actually causing MC (for some people, not everyone), but if you really need one, probably the safest option is buproprion (Wellbutrin). It has the fewest side effects.

One other option (in consideration of your symptoms) is to ask your doctor for a minimum dose of amitriptyline (Elavil). At the minimum dose (10 mg), several members have found that it helps to regulate their motility to help maintain remission. And even though the dosage is too low to have antidepressant effects, amitriptyline is a powerful antihistamine, so it can help to control mast cell problems. The downside of Elavil is that if it is taken long enough, on a regular basis, the body becomes dependent on it, and many people are unable to wean back off it, so they are stuck with taking it for life.

I'm not recommending that you take it, I'm just bringing it to your attention as an option, if you feel that you may be unable to stick with the diet needed to restore your health, without some sort of help. We are all different though, and we have several members who feel that their MC was caused by their taking amitriptyline. With medications, there are never any guarantees that they will work, (and there are always risks that they may cause additional problems).

Trust me, we all have trouble forcing ourselves to stick with a rigid diet, and it is never fun to lose the option of enjoying all the foods that we once enjoyed, but we do what we have to do, in order to get our life back.

You're very welcome,
Tex