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Joined: Jun 2009
Posts: 127
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Journeyman_AS_Kicker
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Journeyman_AS_Kicker
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Joined: Jun 2009
Posts: 127
I just started taking LDN and have been taking it for the past 7 nights now smile yay!

I'm taking 1.5 mg usually around 10-11pm at night. The first couple of nights were rough! My rib pain was really bad and I barely slept. According to the yahoo LDN users group, it's normal to at first see an increase in symptoms I suppose?

It was suggested by the yahoo group to try every other night since I could be a slow metabolizer. I tried that one night and the pain was just as bad.

However at about night 5, something drastic happened in that I actually slept through the whole night and my rib pain was much, much better! Wow this is amazing as I haven't slept good in years. I don't want to get my hopes up too much though.

My doc wanted me to try the 1.5mg for 2 weeks, and keep increasing every two weeks to 3.0, then 4.5 as per the norm.
Curious what other AS'ers are doing that take LDN. I also know you're supposed to take it at night, but I've heard of people taking in the morning as well. I've also heard it's better to stay at each level for up to a month before increasing dose?

The only side effects I've had thus far is I'm definitely dreaming now since I'm actually sleeping. Also, for the first part of the day, I feel semi-jittery with a bit of mild anxiety. I'm sure I'm just getting used to the LDN but other's have also suggested going down to maybe 1mg, or .5 each night instead of the full 1.5. I got a syringe and dissolved a 3mg tab in 3ml of water. I've heard this can be kept out of the fridge for up to 60 days or 90 days if put in the fridge. Planning on trying the 1mg tonight and seeing if that changes anything?

Sorry for the long winded post, just trying to get an idea of what others are doing and your experience/results.

Thank you!

Jason


Last edited by FlexibleMind; 04/19/13 04:05 AM.
Joined: Jul 2004
Posts: 1,934
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Joined: Jul 2004
Posts: 1,934
My husband started on 3mg then went to 4.5mg about a month later. No side effects..not even the vivid dreams.


Chelsea smile

Joined: Jan 2008
Posts: 21,346
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
i started at 1.5 mg, then 3 mg, then within a few weeks, 4.5 mg.

i've been on 4.5 mg for almost 4 years now.

i still flare, and i take aleve and Methyl pred nisone for that.

but the LDN has made tearing tendons and ligaments a thing of the past.

my enthesitis is so so much better.

while i get a little tendonitis when i flare still, it goes away so much faster now. and nothing torn!



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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