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09-12-2013, 10:16 AM   #1
Jmrogers4
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LDN and Prednisone

So Jack has been having some symptoms for the past 4 weeks, started fairly mild and I just attributed to the stress of starting at a new school (high school) and figured he would bounce back after a few days or so but he seemed to be getting worse so we had a fecal calprotectin done and his baseline was 90 when he was having no symptoms and all blood work was normal. It came back this time at 293 so while not abnormally high (they consider anything under 160 as normal) definitely not what we wanted to see if compared to baseline.

So GI recommended a 5 day burst of prednisone 40/mg a day for 5 days, we won't even have to do a taper it is so short a time. I asked him about the 10mg recommended dosage of pred along with LDN and he said he had never heard that but that 10mg would really not make a difference as it would not be a therapeutic dosage. We pulled up the studies while we were there and his take was that in order to be in the study that the dosage of pred had to be 10mg or less so as not to interfere with findings since anything higher would be more therapeutic. So I'm guessing you can do Pred with LDN? Thoughts?

So hoping this quick burst will be enough to knock down inflammation and get things back under control. GI also added Pentasa back in. We felt it didn't make much of a difference one way or the other the last time he was on it but I'm hoping that it will be just enough this time to bring everything back under control.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-12-2013, 12:50 PM   #2
Kev
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Join Date: Jun 2006
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The logic of his theory sounds plausible. My personal thoughts are that, although never having been tested... worst case scenario it would only halt the benefit of LDN for 5 days.. and I don't think that would amount to anything.. and if it did (and its a big IF) the burst of pred should more than compensate. My concern is.. and this is usually why they ramp up and taper off pred.. high dose steroids introduced fast (in a burst) is very hard on the system. I'm pretty sure your doctor is aware of that. Just a heads up on the off chance he hasn't discussed the implications (I did hi dose steroidal enemas years ago... wasn't fun). My concern is why the setback. It seems out of charactor for LDN. But, I digress. I'm guessing, that pred reaction aside, this is worth the gamble. But it is a gamble... because no one has ever tried/documented this combo before, on just theory
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-12-2013, 01:01 PM   #3
Jmrogers4
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You are echoing my thoughts exactly Kev.
Why the quick burst? Well I believe as he has not been on Pred since diagnosis in 2010 and since Jack had been doing so well, he just needed a little boost to get inflammation under control and hopefully allow the extra Pentasa to keep it under control. Not something we would keep doing but we are hopeful this is just a blip, something set it off (and who knows what that could be, the c-diff in July? Seems to have slowly declined since then).

And yes hoping that if it does cancel out the LDN 5 days is not long enough to make a difference. Just so many unknowns which is why I hope they keep up with the research and we won't have so many guesses or "I hope this works".

I do take Jack's thoughts and feelings into consideration and when he is in tears nearly every day because it hurt (this from the kid who broke his foot in the morning, went all day and through 2 hours of conditioning for football and only said his foot was bothering him) and just wants to feel better fast, we thought (hope) the Pred will do the trick.
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