Getting off of entocort

Beth · Post by **Beth** » Tue Mar 27, 2007 6:56 pm

Hi everyone,

I'd like to get off of entocort entirely because I feel pretty stable now in terms of my gut. I'm down to one pill every other day. Could I just stop taking it now and be fine in terms of withdrawal? Would love your thoughts on this.

Best,
Beth

Post by **tex** » Tue Mar 27, 2007 7:16 pm

Hi Beth,

Based on the fact that a single pill every other day is one-sixth of a normal full dose, I would think that you could safely stop at that point. If you have any reservations about stopping there, another week or two at something like two pills each week should certainly do the job, but I doubt it would be necessary.

Your body is not nearly as dependent on budesonide, (since it's not a systemic drug), as it would be on something like prednisolone, for example. IOW it only affects your ileum and colon, for all practical purposes, so there shouldn't be much risk of ill effects.

Obviously, this is just my opinion, though, FWIW.

Wayne

bobh · Post by **bobh** » Tue Mar 27, 2007 10:38 pm

I agree with Tex, I never heard of any withdrawal issues.

Beth, today you sent me your Cortisol graph, and PERSONALLY I would hand the torch over to Cortef and stop the Entocort as you get past the first week of tiny baby doses of Cortef (they are both a cortico-steroid).

But if you "ran out of pills today" and were in remission, then you'd probably be OK in any event. For what it's worth, my MD said with any inflammatory bowel disease, it is best to wait for 3 full months of no inflammation before stopping. Part of why I stopped is that Entocort is so expensive, and I am in dept to my eyeballs. But I have a lot of faith in Entocort, and glad you had relief finally!

Beth · Post by **Beth** » Wed Mar 28, 2007 10:05 am

Thanks, Bob and Wayne, for your input. I'm officially off entocort now, dealing with my LC through diet alone. Wahoo!

Post by **tex** » Wed Mar 28, 2007 10:29 am

:thumbsup;

I hope it goes smoothly.

Wayne

Pat · Post by **Pat** » Wed Apr 04, 2007 9:51 am

Beth,
I have tried to follow your progress and somewhere along the way I missed what happened after you went to the GI doc and he wanted you to take pepto. What happened there? What diet are you following now to keep you in remission? Congratulations on getting to that point!!! I am trying but getting in to the GI doc has taken a long time. I go next week.
Thanks,
Pat

Beth · Post by **Beth** » Thu Apr 05, 2007 11:47 am

Hi Pat,

Thanks for asking. Well, here's what happened: I went to see the GI doc while I was still feeling terrible. Shortly after I went to see him, when I was still on 3 entocort/day, someone on this board mentioned that a number of the supplements I was taking (licorice root, 5HTP, kavinace, a B-vitamin complex, among others, all to treat the adrenal fatigue) could be contributing to my flare. So, I stopped taking everything, and within a week my flare was over. I started to slowly taper off the entocort, and now I'm maintaining normal digestion by staying away from gluten, dairy, all grains, and soy, though corn seems to be okay. I should cut down on my sugar intake, though - I've been eating meringue cookies b/c I have a sweet tooth, and though they're very low in calories, they're very high in sugar. I don't think my stomach is very happy about all that sugar entering my body. But for the most part, I'm doing so much better. I never tried the pepto bismal thing because I just had a sense that it wasn't going to help. Oh, and then I got an email from my GI last week saying that he didn't agree with my original diagnosis of LC from 5 years ago, that the slide didn't show any evidence of LC, or even colitis. I find that so annoying. Don't doctors listen to what we're saying? I mean, who cares what the official diagnosis is if all of my symptoms point to LC? So, I'm just ignoring his email and continuing on my merry way of remaining D-free in the way I know works - through diet.

Hope this helps. Feel free to ask any other questions if I haven't answered everything.

Best,
Beth

Post by **tex** » Thu Apr 05, 2007 1:23 pm

Beth,

I couldn't help but chuckle at your remark about ignoring your GI doc's email, and going merrily on your way, enjoying remission.

I have to agree with your philosophy. Who cares what he wants to call it? As I often say, there's no point in arguing with success.

Tex

Pat · Post by **Pat** » Sun Apr 08, 2007 7:01 pm

Wow, Beth, I can't believe your doctor even looked at the slides. My doctors here just go by the pathologists report. But your syptoms speak louder than words and your remission is definitely remarkable. Congratulations in achieving that level. Thanks for responding.
Pat

moremuscle · Post by **moremuscle** » Wed Apr 11, 2007 10:48 pm

Congratulations, Beth

I am very happy for you - I haven't been on the board for a little while but I remember that you were struggling last time I read a post from you; that's when you were doing very well with your diet while still taking supplements. I have to admit I didn't think you would have the guts to stop taking the supplements

I feel totally thrilled for you

I used to take between 5-10 supplements every day before I realized they could be making me sick (by containing some of my intolerances) and stopped taking them. It took me several months before I finally made the decision to quit supplements cold turkey style - in the beginning I searched for and tried many less allergenic supplements still thinking that I would do serious harm to my body if I didn't get these nutrients via supplements. In the end I realized that the serious harm to my body might indeed be caused by the supplements

I can imagine how thrilled you must have been to see such wonderful results after only one week w/o supplements

I have been supplement free for approximately 2 years now - I am still alive

and healthy, I think

Good luck to you and THANK YOU for making this wonderful choice for yourself - you are an inspiration

Love,
Karen

MaggieRedwings · Post by **MaggieRedwings** » Thu Apr 12, 2007 5:50 am

Morning Beth,

I am with Karen on being one who took a number of supplements - me many being a vegan - and in the end I dumped them all and went cold turkey. They were not helping in the least. A couple of years ago I was very faithful to taking Black Cohash and in the end both of my doctors thinks it aided in the incredible growth of 2 fibroids which when removed resulted in my hysterectomy. That is one to be careful of for all women and it is endorsed a lot by naturpaths as a good pre-menopausal supplement.

So glad you are doing so well.

Love, Maggie

Beth · Post by **Beth** » Sun Apr 15, 2007 5:31 pm

I haven't been on the board for a few days - lots of busyness here on my end.

Yes, going off supplements has been very helpful, but now that my husband and I want to start our family, I'm concerned about getting the right nutrients, especially folic acid. I went to see a nutritionist a few days ago, and although for the most part I thought she was rather incompetent, she did suggest taking liquid folic acid. I thought I could try it - anyone tried liquid vitamins?

Thanks,
Beth

harvest_table · Post by **harvest_table** » Mon Apr 16, 2007 12:30 pm

Beth wrote:Yes, going off supplements has been very helpful, but now that my husband and I want to start our family, I'm concerned about getting the right nutrients, especially folic acid.

In light of the fact that some foods high in folic acid you have eliminated from your diet I can understand your concern about getting enough, especially if you plan to start a family. By the way, that's exciting! Just curious, how old are you? I had my daughter when I was 39, she's 13 now.

If I recall, your gf and df, are you staying away from all grains also?

Here's a link about the importance of folic acid, pregancy and foods that contain it.
http://www.health.state.ny.us/nysdoh/folic/1335.htm

I went to see a nutritionist a few days ago, and although for the most part I thought she was rather incompetent, she did suggest taking liquid folic acid. I thought I could try it - anyone tried liquid vitamins?

I haven't tried liquid vitamins but had an interesting experience with folic acid. Took B12 for months without noticing any significant improvements and it wasn't until I switched to a brand that included folic acid that I started to feel it's benefits. I was probably deficient in folic acid.

Are you planning on taking a pre-natal vitamin? That might provide all you need.

Love,
Joanna

Beth · Post by **Beth** » Mon Apr 16, 2007 5:49 pm

Hi Joanna,

Yep, I'm off all grains, as well as maintaining a gf and df diet. I really don't think I can take a prenatal vitamin. My colon is still too inflamed to handle any supplements. That's why I thought I might try folic acid by itself. BTW, I'm 32. Have been married for almost four years now and everyone in my husband's family is ready to pop waiting for us! Patience, I keep telling them. Graduate school and my book must be finished first.

Anyone else have any thoughts on the vitamin issue?

Thanks,
Beth

harvest_table · Post by **harvest_table** » Wed Apr 18, 2007 11:52 pm

Beth, it might be wise to also take a serious look at your vitamin D intake now and during pregnancy. This report is concerning since all of these women took prenatal vitamins but still were deficient in D, after delivery.

http://www.sciencedaily.com/releases/20 ... 105140.htm

Love,
Joanna