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Starting LDN while tapering- timing and dosage

Hi,
I've posted a smiliar comment in a different thread before. But I figure that maybe this would be a good question to post on it's own. I bet there are others out there that may have similar thoughts and I am still not sure how to go about this LDN thing.

I am currently on 15mg Prednisone, tapering 5mg a week (2nd attempt) and 50mg DHEA (to help the tapering). I had been diagnosed with a "severe" form of Crohn's, and I have now learned what that means: Unfortunately, for me, it's in lots of places in my body, top to bottom quite literally. So therefore "severe"= complicated to control. I've been on Prednisone since my diagnosis. Was supposed to be on it for 6 weeks, but couldn't get off. So I have what they call "Prednisone Dependency". So far I've had no luck getting symptoms under control. And I have tried lots of alternative options. Had to go back up to 40mg recently and since then have developed more horrific symptoms that are literally unbearable. Now am at my wits end and wanting to try the last thing, LDN, before I say "yes" to biologics. :ack:

I have been prescribed 4.5mg prednisone capsules, but have not started yet.
My questions are:
1. At what point/ is there a specific dose of P. at which point I should start LDN?
2. Is 4.5mg too much to start? I am really not a "big" person (100lbs) :)
-I didn't pay much attention to the dosage when asking about it, my practionioner was happy to let me try so I forgot.
3. What symptoms does LDN really help with? Is it just the common symptoms, Diarrhea (I don't have that), abdominal cramps?...
4. Could you specify what symptoms you have/ have had?

I appreciate any advice I can get!!
Thanks!
 
1. 10mg of prednisone is the recommended maximum with LDN
2. My son weighed 76lbs when he started at 4.5mg. I think according to the pediatric study it should be 3.6mg but he seems to be doing great at current dose so I'm reluctant to lower at this point
3. Since my son is 13 as far as what it has helped him with (his is located pretty much throughout as well). General overall health, he has never had much D, alot of stomach pains, cramps, joint pain, eczema, all gone. Growth has increased we have had about an 1.5" since Oct. and a gain of 6lbs, recently lost 3 but seems to be putting it back on quickly (thinking it was holiday excitement and finals).
I think obviously the goal is remission and mucosal healing, we won't know about the healing until June as that is when he is scheduled for scopes to see how well LDN is doing. I'm hopeful that we have had that based on his general appearance/growth, etc. He really did not grow gain much weight during the 3 years on Imuran/Azathioprine weight stayed the same within a pound and growth was less then an inch. So he seems to be able to absorb more nutrients from his food now.
We do stick with a pretty good diet, little to no processed food, low sugar etc.
Jack started on LDN and started to feel better at the 2 month mark, no pain, constipation, eczema, urgency. But I think that recently we are enjoying even more healing based on weight gain/growth.
Hope it works well for you, I know there is a percentage of people it does not work for as with any other medication. Keep us posted
 

Kev

Senior Member
I concur with the 10mg of pred... that is the info I read too. I had extensive outbreak of Crohns... literally everywhere except at my recision scar. LDN alleviated all of my symptoms EXCEPT with cramping. My cramping pain comes from the extensive scar tissue I have, which is too large to surgically remove. Except for the pain, my life post LDN is almost like my life pre Crohns. I watch my diet, rest a lot because the scar tissue limits what my engine (GI tract) can produce, and I augment my diet with vitamins, supplements, etc.. LDN has saved my life, and given me an enjoyable, livable life for the past 5+ years. And I don't lose sleep wondering what side effects it will hit me with.
 
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