3 mg. Entocort per week doing anything?

[Sue777]

Hi Gang.
Long time member here, tried everything over the course of the past 15 years, tried most of the drugs, done the Enterolab testing and eat according to the results, take the magnesium, etc. etc. What FINALLY seems to be keeping me in remission is the drug 6MP (mercaptopurine) which I fought my doctor on for years - I did NOT want to try it and kept trying to stay on a low dose of Entocort to keep me in remission (along with a clean diet). But he and my GP have stressed over and over that I can not rely on Entocort forever, and now that I have osteo, I agreed I needed to cut back or get off.

Anyway, right now I'm taking 75 mg. of 6MP per day, eating clean, and taking ONE Entocort tablet ONCE a week. My doc is happy with that and so am I, but I have to wonder: is 3 mg. of Entocort per week really doing ANYTHING for my MC or should I just give it up? I can't imagine it's helping my colitis at all at that tiny dose, but it's kind of my security blanket and I feel like if it's working, why upset the apple cart? On the other hand, to be able to give up another drug from my regimen would feel really good.

So, do you think that low dose is helping at all or is it just helping my peace of mind?
Thoughts?
Sue

[tex]

Hi Sue,

This is just my opinion, because we have no published research to go by, nor do we have the successful experiences of vast numbers of members here to support this position, but personally I'm reasonably sure that small-dose budesonide does provide a (small) amount of background inflammation suppression that is sufficient/necessary to prevent relapses in some cases. I base this observation on the fact that I'm personally aware of a small number of cases that always seem to relapse when they try to discontinue the budesonide (regardless of the elapsed treatment time). Even doses in the one capsule per week range have been cited in some of these cases as vital for maintaining remission.

That said, I'm not sure that small-dose budesonide remains necessary in the long range scenario (years). The immune system suppressant, for example, may/should make the budesonide unnecessary in such situations.

Here's another thing to consider:

Research shows that virtually all restaurants serve cross-contaminated meals, regardless of their claims (I posted that research a couple of months ago). I don't recall if you ever eat out, and I don't know if you've read Kari's recent update post, but she proved by example that even in seemingly hopeless cases, stopping all instances of eating out, and doing all her own cooking, using no processed foods, brought the first Norman in many years. And I don't believe she's ever taken budesonide.

But regarding the peace of mind question: research shows that the placebo effect is very powerful. Based on that, logic suggests that a med that's actually effective, surely provides a much more powerful security blanket effect than a placebo.

But again, that's just my opinion.

Tex

[brandy]

My experience....yes. This is the reason for my response. I had side effect of dizziness/brain fog on budesonide.
I was on budesonide a total 4.5 months. THe last 4 weeks I took 1 budesonide every 4 days. Then I took my last one.
Two weeks after my last pill my brain fog magically cleared and dizziness that I'd had for 5 months was gone so even the
very low dose of 1 budesonide every 4 days was causing me side effect of brain fog.

That said most people are able to get off of budesonide if you've been on the 1 pill a week for a while and you are GF and DF.

[Sue777]

Thanks for the posts - much appreciated and I value everyone here's opinion. I think I will not upset the apple cart and stay with 1 Entocort a week, at least for a while longer. Major changes going on in my life so this is no time to try something different that could take me out of remission. I don't imagine one a week is doing much harm, if any, to my bones, so for now.... I'll stay status quo.

Thanks again for your thoughts and opinions - I wouldn't go anywhere else for an opinion, not even my doctor's offices. :)
Sue

[dolson]

I am looking for a drug that's not a steroid or Prednisone. Can't, won't and will not take the stuff. Doctors give their children minute amounts of steroids but give their patients huge amounts of steroids. What do they care if our bones break and crumble and we get cataracts? I spoke with a woman down the street from my house whose son is a doctor and he hates steroids and what it does to our body. He does not give his children steroids - PERIOD! Prednisone ran me MAD and getting off the stuff takes months. I can say I hate Steroids. I'll take Erothymicin, an antibitiotic that has anti inflammartory properties. It worked in my lungs and it may work in our gut.

Sue, what are you taking again? Is it a steroid? Thanks, Dorothy

[tommyboywalker]

Thanks for the posts - much appreciated and I value everyone here's opinion. I think I will not upset the apple cart and stay with 1 Entocort a week, at least for a while longer. Major changes going on in my life so this is no time to try something different that could take me out of remission. I don't imagine one a week is doing much harm, if any, to my bones, so for now.... I'll stay status quo.

Thanks again for your thoughts and opinions - I wouldn't go anywhere else for an opinion, not even my doctor's offices. :)
Sue

Hi Sue,

I think your decision makes good sense. One Entocort a week is about as minimal of a dose as I have ever seen on this forum. And if you are now in remission and "major changes" are occurring in your life, I would absolutely stay the course with what you are doing for now. Stress plays a big part in MC; the only flare I had after discontinuing Entocort was during a period of high stress. Tex made a very good point in this thread. The placebo effect can be very powerful. If there is some placebo effect at play and I think there may be, the mind-body connection cannot be overstated and if we think things are helping, they often actually ARE helping!

I had the same question as you as I weaned myself off Entocort (Budesonide). With the advice of many here, I opted for a VERY long taper of the drug and it worked out very well. My last Budesonide was in mid November of 2018 and I am now managing extremely well with diet alone.

I am dairy free and gluten free and I make a point of consuming lower amounts of fat and sugar and also I don't eat really big meals, the gut does NOT like that! I am very happy to report that my bathroom habits are completely normal, the same baseline as I had before I developed this tricky disease. I was down 30 pounds as I worked through this, then as I healed I picked up 15 of those pounds and I am now at what I would consider my ideal weight. So a little silver lining? Ha!

So before you make that next step, I would have a solid diet plan in place and stick to it! Boy I have found that even a little bit of wandering can trip us up. I see that you are gluten free which is great. Did your Enterolab testing show any other sensitivities or have you through experience felt that you are sensitive to anything else? Dairy? Soy? A lot of experimentation for many of us.

I wish you all the best Sue. Please keep us updated. We are all learning SO much through this forum!

[Sue777]

Thanks for the encouragement and good wishes, TommyBoy..... it's the reassurance I needed that continuing to do what I'm doing (and what's working) makes the most sense right now. Maybe in 3 or 4 months when things in my life half reached a new normal then I will re-consider even giving up the one a week, but for now, why mess with what's working, right?

Dorothy, the medication I'm on is Mercaptopurine, or 6MP for short. It's actually a chemotherapy drug but at a much, MUCH lower dose, and I believe it's main benefit in colitis is to reduce the body's immune system a bit so it stops attacking our bodies. Like I mentioned, I fought trying it for years because the sound of "chemo" scared the crap out of me, but it's a very low dose and I haven't had any side effects from it. And if it gets me off of steroids, that's a good thing. It's working for now, and if and when it stops or causes me problems, then I will re-evaluate, but for now, I'm enjoying some "normalcy". And you will, too, it just takes patience, faith, and perseverance!
Sue