LDN to taper off Entocort

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njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 9/29/2009 4:41 AM (GMT -7)   
My daughter has been on Entocort for the last few years - one pill a day for the last two...the last time she tried to taper Entocort, she landed in the ER within a week of starting the taper of one day on/one day off.
 
This time, she has been on LDN for eight weeks, and is currently tapering off Entocort slowly...two days on, one day off for about a week or two, then one day on/one day off for at least a couple of weeks, then off completely.
 
LDN has brought her sed rate down to 2 - before this, it was never lower than 8, so it seems to have had a beneficial effect. Her labs are normal while on LDN, except for low vitamin D, iron, zinc (which in her case, are chronically low despite supplementation).  

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 9/29/2009 6:08 AM (GMT -7)   
Wow, that's good news, njmom! Please keep us posted!

BeeSting
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Date Joined Nov 2008
Total Posts : 392
   Posted 10/7/2009 3:58 AM (GMT -7)   
Yes, this is good news, LDN is able to get sed rates down, I know, cause I have been using LDN for more than 2 years. I am also active in a yahoo group that just has started, the group is created just for those using LDN and having any kind of IBD or IBS (LDN is helping IBS as well). In that group we're discussing anything that could help. Many of us either goes glutenfree (no flour) or is using a diet like the SCD, Jini Palteson Thomsons diet, or the Makers diet or other diets. Others are just eating regular food but using LDN.

We have learned that LDN and Entocort or prednisone is ok to use paralell, and I always suggest that you taper these slowly, and start LDN when on 10 mg prednisone./3 mg entocort.
LDN is able to stop the pain we're experiencing every day, and we have to taper pain medicine that is containing narcotics. The Phase II will have a closure in 2010 and we'll get more information at that time. So far they know that LDN is able to increase the endorphins and the beta enkephalins, this leads to the fact that people with auto immune diseases may be for the first time in years will have a normal endorphine level. This increased level is doing the work, that means, the body itself is doing what it is supposed to do; kill the bad guys instead of trying to kill it's own bowel walls. The group that I am mentioning has in a short time got more than 100 members using LDN, the members have alot to learn from other list mates. And oh, we're not negative to any medicines. I woul also like to give you a link where you can read about how other people are doing on LDN, this is a database collecting the results of LDN for many autoimmune diseases. www.ldndatabase.com

njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 10/7/2009 2:28 PM (GMT -7)   
Thanks, EMom and Beesting. After just over a week of two days on Entocort, one day off. this past Monday my daughter switched to one day off, one day on Entocort.

She will take her time at this stage of the taper, continuing it for at least two weeks. I'm looking forward to her being off steroids for the first time in more than three years.

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 10/10/2009 2:36 PM (GMT -7)   
njmom, I would like to tell you that you have to monitor your daughter for having any kind of yeast problems. Entocort or prednisone (and also antibiotics) is known to create this, and a yeast overgrowth may be the fact when she has used LDN for 3-4 weeks or more. Of course, not everyone get candida due to prednisone and not everyone get more of it due to LDN, but just as you know. I have read that threelac/fivelac is a good treatment, but here you have a link to go: http://candidablog4u.com/category/candida/
A candida overgrowth often leads to increased diarrhea. This is not what we expect when using LDN, but this happens now and then. We have a lot of good solutions to suggest. Take care!

njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 10/10/2009 5:01 PM (GMT -7)   
She didn't get a yeast overgrowth from Entocort, but she did, three years ago, get thrush from being on the highest dose of Entocort at the same time as she was on a hefty dose of Flagyl for suspected c diff.
 
She never has D. Because she is on a diet that is mostly SCD, and because she downs homemade yogurt every day, I don't think she is a candidate for yeast overgrowth.

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 10/11/2009 1:29 PM (GMT -7)   
That's great, but I thought I should tell you so you that you know,.... in case LDN doesn't work as expected, they often find that LDN triggers a candidiasis growth. LDN does not make the candidiasis, but because of the change LDN makes, the environments changes as well. For those who get this change, there is a typical increase in diarrhea. Does your daughter have Crohns in her small intestines?, may be in the jejunum? (The middle section of the small intestines). I do have Crohns there, and I don't have the typical big D.
 
Oh, and have you been to the www.ldndatabase.com to fill in your daughters changes in health? There is a section for Crohns. You could fill in now, and have an update in some months. That database will be of help to other Crohnies who want to read how others are doing on LDN. The best, Bee
 
 

Post Edited (BeeSting) : 10/11/2009 2:32:30 PM (GMT-6)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/11/2009 1:31 PM (GMT -7)   
Thanks for the heads up. Her Crohn's is in the terminal ileum.  

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 10/12/2009 10:25 AM (GMT -7)   
any chance of posting the link to the yahoo group? I don't know the rules on that, but I'd love to join.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg caused 100% crohn's remission.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/12/2009 11:12 AM (GMT -7)   
njmom said...
She didn't get a yeast overgrowth from Entocort, but she did, three years ago, get thrush from being on the highest dose of Entocort at the same time as she was on a hefty dose of Flagyl for suspected c diff.

She never has D. Because she is on a diet that is mostly SCD, and because she downs homemade yogurt every day, I don't think she is a candidate for yeast overgrowth.


njmom, I am confused. Please correct me if I'm wrong, but I thought thrush is an outward sign of yeast overgrowth or candida. confused

janicea, I believe this is the link:

http://groups.yahoo.com/group/LDNandIBD

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 10/12/2009 1:44 PM (GMT -7)   
Thanks!
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg caused 100% crohn's remission.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/12/2009 7:44 PM (GMT -7)   
My point was that Entocort, by itself, never caused thrush. The thrush appeared only once, on her tongue, when Entocort and Flagyl were taken together, both at very high doses. 
 
So it was either the Flagyl or the combo that did it. From then on, no matter how high the dosage of Entocort, she never had any sign of yeast overgrowth. Entocort can cause yeast overgrowth because it tends to raise blood sugar. Flagyl causes it for obvious reasons -- it wipes out bacteria which compete with yeast, so the yeast then takes over.  
 
She was also not on SCD, not taking probiotics -- it was when she was first diagnosed.
 
 
 
  

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/4/2009 5:34 PM (GMT -7)   
This is an update. My daughter has been fully off Entocort for 4 days. So far, so good.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/6/2009 8:00 AM (GMT -7)   
My daughter is on day 6 and counting of just LDN, no more Entocort. No symptoms.

Nearly a full week without Entocort, for the first time in years.

Btw, the "leaky gut" test showed no more intestinal permeability after she started LDN, and her CRP and sed rate are also down since she started LDN.

Now that she is off Entocort, will need to check in a few weeks to make sure CRP and sed rate are still down.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. SCD multivitamin, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 11/6/2009 2:26 PM (GMT -7)   
njmom, I am so glad that LDN is able to help your daughter. No one loves what steroids are doing to us.

I agree with you using a good diet with LDN, it seems that LDN needs some help by a good diet, the more you could regulate the immune system by healthy eating, the better LDN is working. /Bee
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