Tapering off Entocort using LDN

Linda in BC · Post by **Linda in BC** » Wed Feb 09, 2011 11:16 am

I am wondering if the one Entocort every 4 days at this point is just providing me with psychological security or if it is actualy doing something. I'm not sure how long I should continue to taper down like this. Also if I continue, how long should I stay at each schedule (two weeks? three weeks? one week?) Any thoughts anyone?

Linda

Post by **tex** » Wed Feb 09, 2011 1:11 pm

Linda,

That's a tough question, and about the only one here qualified to answer is Gloria. How long do you plan to continue taking the LDN? That might be an important part of your program.

Anyway, good luck, whatever you decide to do, and please keep us posted.

Tex

Gloria · Post by **Gloria** » Wed Feb 09, 2011 2:43 pm

Hi Linda,

I would base your decision on how your BMs are. If they deteriorate between the days you take Entocort, then you're wise to stay on it until you see no deterioration. Sometimes it's necessary to eliminate additional suspicious foods in order to see an improvement.

If, however, you consistently have Normans and they appear in the same frequency as they did before you had MC, then you are probably safe in going off it. One capsule every four days is a pretty small amount. I believe that Harma wrote that she's taking one capsule every two days (1/2 capsule per day), but she's not seeing Normans regularly.

I'm still learning as I go, but I probably got off Entocort prematurely before because I didn't consistently see Normans every day, like I do now. Even recently, I had to take an additional capsule every few days because Norman started to deteriorate. Once I eliminated two more foods (which I hated doing), he's become a steady visitor again, without the need for the added capsule.

I'm taking one pill per day now. It's taken a year to get back to that level. I blame it on the chicken-rice elimination diet I was on for two weeks last February.

Good luck with your decision. The general rule here is that if you can stay symptom-free for 56 days after going off Entocort, you are probably home free - assuming you adhere to the diet, of course.

Gloria

Linda in BC · Post by **Linda in BC** » Wed Feb 09, 2011 3:29 pm

Thanks very much, Gloria and Tex, fo ryour suggestions. I have consistently seen Normans since I started the Entocort 4 months ago and not once have I ever seen any sign of deterioration when I have dropped down, even before I started the LDN. I am tempted to keep dropping down, maybe a little faster than I have, until I have stopped altogether so that i can begin that 56 day "assessment" period. I think I will continue the LDN at least until that period is over and then start to taper it off (if I remain symptom free that is.)

Gloria, I didn't start taking the Entocort until I had discovered what I believe was the last of my intolerances, eggs, and I think that's why I had so much success with the Entocort, and so quickly. If I was still eating eggs, I am sure I would not have. I am so glad that you are finally starting to see good results from all your hard work. I do beleive that as long as we are eating things that bother us, remission, with or without meds, will still elude us. Yours has been along haul but you have done what needed to be done! My fingers are crossed for you.
Best regards,
Linda

ant · Post by **ant** » Fri Feb 11, 2011 2:39 am

Dear Gloria,

Good news you are down to one entocort a day!

Dear Linda,

The LDN is interesting. Sorry if this has already been posted (I am finding it hard to keep up with so many posts), but the website

http://www.lowdosenaltrexone.org/

says that people with Crohns, Ulcerative Colitis as well as Celiac (amongst other Autoimmune diseases) benefits from LDN. But the site also cautions....

People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications.

I would like to try LDN but worry about my use of Entocort

Best, ant

TooManyHats · Post by **TooManyHats** » Fri Feb 11, 2011 8:37 am

I'd like to know how to approach my doctor about this. This is one medication that I would be very willing to take. Linda, how did you convince your doctor to prescribe this?

Post by **tex** » Fri Feb 11, 2011 11:08 am

Ant wrote:I would like to try LDN but worry about my use of Entocort

I believe the warning is not because of an increased risk of any adverse events regarding the taking of an immunosuppressant, but rather about the possibility that the use of LDN might provide a window of opportunity each day, for the immune system to set about trying to reject a transplanted organ.

Unless you have an organ transplant, all that can happen is for the Entocort to become less effective at suppressing the immune system for a couple of hours or so each day. Since no one really knows how corticosteroids work to suppress inflammation, in the first place, that may be totally irrelevant to the use of Entocort to treat intestinal inflammation.

Since Entocort typically begins to suppress symptoms within a matter of days, to a few weeks, and it takes many months for budesonide to make any significant progress toward suppressing the immune system, obviously immune system suppression doesn't play a big part in the effectiveness of Entocort for treating an IBD.

At least that's the way I see it.

Tex

ant · Post by **ant** » Sat Feb 12, 2011 7:43 am

So LDN (if you do not have a transplant) could, in theory, mitigate some potential long term negative affects of Entocort?

I know this question is rhetorical.......scientific research is needed to answer it.....but it is, neverthless, an important question.

Best, ant

PHD students reading this post please note

Post by **tex** » Sat Feb 12, 2011 10:04 am

That's a tough question, but I kind of doubt that it would have any significant effect on budesonide, (or budez). Remember - all it does is sort of reset the immune system, once a day. It doesn't undo any damage, or change the potential of the immune system - it simply puts it on hold for a couple of hours. The corticosteroid compounds will still be there, working normally, theoretically, at least. That's just my opinion, though, and it's certainly not chiseled in stone, since no one has actually researched this, (at least I'm not aware of any research on the topic).

Tex

TooManyHats · Post by **TooManyHats** » Sat Feb 12, 2011 10:33 am

Does anyone have any suggestions on how to approach your doctor about LDN? I have a GI appt Monday and need some ideas, please.

Post by **tex** » Sat Feb 12, 2011 1:19 pm

In general, GI docs seem to be the least open to treatments that require thinking "out of the box". Naturopathic doctors are the most likely to embrace it. I've sent an e-mail to AllDayChemist, to see if they can supply it, but I have no idea how long it will take to get a response.

Tex

TooManyHats · Post by **TooManyHats** » Sat Feb 12, 2011 3:46 pm

What a waste of my time, but I've already confirmed the appointment.

Post by **tex** » Sat Feb 12, 2011 9:36 pm

Who knows, he might surprise you. Not all GI doctors are created equally. It's worth a try, anyway.

Maybe Linda knows the secret word, and she'll have time to log on and read your posts before Monday's appointment.

Good luck with the appointment.

Tex

Linda in BC · Post by **Linda in BC** » Sun Feb 13, 2011 10:42 pm

Arlene wrote:

Linda, how did you convince your doctor to prescribe this?

Hi Arlene, Sorry for taking so long to respond .. just too much to do this week/ weekend.

I simply went to my GP with info on LDN that I had printed out from the LDN.org website on how it works and asked for it ( I don't have a GI specialist.) My GP is young, was trained in Ireland and had never even heard of Lymphocyitic Colitis until he had met me, so he was at a loss as to anything he could do for me, and was willing to let me try what I thought might help. He had had one other patient (with MS, I think he said) who had asked for it, but he din't really know much about it. He said he would prescribe it but he was only comfortable giving me a prescription for 1 month, to start, at 1.5 mg per night. Getting the prescription is only half the battle. Finding a pharmacy that compounds it into 1.5 mg or more pills is the other half.

I got it compounded from a pharmacy in Ontario and they had to ship it out. It is only manufactured in 50 mg pills right now, as that was the dosage it was first developed in for the treatment of alcoholism. I got the 1.5 mg prescription, but it took about a month for me to get it. I knew I was going to run out before I could get more so I promptly also ordered it online from All daychemist.com, an online pharmacy in India that many of us use for getting affordable Entocort. You don't need prescription to buy from them. They sell it in the 50 mg tablets and I have been mixing it myself with distilled water on my own since then. I have posted recently on how to do that .

http://www.perskyfarms.com/phpBB2/viewt ... hlight=ldn ( third post down)

So if your doctor won't prescribe it, you can always buy it form AllDayChemist. AI learned about getting it form them and how to compound it on an MS support website. A lot of people with MS use it, and get it from there.

Ant wrote: I

would like to try LDN but worry about my use of Entocort

I have been taking simultaneously for the last month or so, with no problems. I wrote to a pharmacist in the US ( Skip's Pharmacy) who is considered, on the MS web forums, to be some what of an expert on LDN ( he compounds it for people ) and asked him if I could take them at the same time. He said he though t so and told me to look up a study by a Dr. Jill Smith, which I did. In it she had people use LDN to taper off Entocort with good results. They actually work on two totally different systems in the body ( ie are two very different classes of drugs) so I was quite confident there would not be an interaction. As to whether LDN can mitigate the negative effects of long-term Entocort use, Ant, I really wouldn't hazard a guess, but I am pretty sure you will find it has a beneficial effect on your GI tract in terms of the MC, and that it would augment the Entocort. It is not as powerful or instantaneous as Entocort, and definitely isn't sufficient as a stand-alone treatment, but should be used with other treatments like diet or Entocort.

Linda