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New LDN user and no sleep

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Lupus
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Posted 10/26/2014 9:27 AM (GMT 0)
I'm on my 5th day of LDN and wake each night at 3 am wide awake. I take the LDN at around 10 pm.
Will this side effect ever end, I can't take the lack of sleep. I"m up for a few more hours and might fall back to sleep at 6 pm. I have started at a 1.5 dose and the first day was miraculous, the follwoing 4 did nothing to ease my pain and upon waking at 3 am I am very naseaus.


Also taking compounded desicrated thyroid 30 mg. daily down from 60 mg. due to LDN
Started taking .5mg ativan at 3 am to try and go back to sleep. Not doing much to help.

Can anyone help? confused
Posted 10/26/2014 6:11 PM (GMT 0)
I'm trying the LDN for undifferentiated connective tissue or possible lupus disorder. I also have fibromaylsia and so I'm not sure if the pain I'm experiencing is a flare from the connective tissue disease or fibro.

I just spent three months outside of Charleston at the beach everyday. So I had lots of sun and the humidity in July and August were unbearable. I have a feeling this set things off but I was already struggling with my thyroid meds not working any longer before I went to SC.

It's just been a downward spiral the last few months. I was diagnosed with celiac recently so I finally decided to go gluten free. Been doing this for 2 weeks and don't feel any different but I won't give up because I think it's got to help in the long run with inflamation.

My ANA has been negative the last 2 blood tests but my dna ss just keeps going up. It now read 227 where anything over 22 is positive.

Any thoughts or help would be appreciated.
Posted 10/26/2014 6:40 PM (GMT 0)
We don't have many members here who have ever even mentioned LDN. I do remember one, but not sure if she was investigating or if she decided to take it. It isn't in the usual "toolbox" of Lupus meds.

The sun will DEFINITELY trigger a Lupus flare...at a minimum you'd see fevers, achy stiff joints and red rashes.

Are you being treated by a rheumatologist?

PS. I searched HW and it looks like Crohns and Colitis forums have the most mention of LDN - perhaps you could find what you need by reading there? Let us know how it goes!

Best wishes -
Posted 10/26/2014 8:08 PM (GMT 0)
Thanks so much for your thoughts. I am seeing a new rheumatologist next week and an endocrinologist early December. I've worked with both in the past. As for the lupus, they gave me Plaquenil and it was just an awful experience. I became so seriously depressed on it that I actually thought about suicide which is not me at all. I was thinking maybe short term steroid use might help get me out of the flare. What do you use for the pain? I can't use any narcotic pain med while using the LDN(low dose naltraxone).
Posted 10/26/2014 10:37 PM (GMT 0)
In general, I don't have much in the way of straight-up-pain. What I do have is almost always associated with inflammation of some sort, or some other secondary symptom that can be treated directly rather than from a pain suppression angle.

Plaquenil slows the progression of Lupus, but with your mixed/unknown dx hard to say if it's of any help -- and certainly not if it gave you depression. Prednisone or another steroid will help get inflammation under control -- but that may not be the source of your symptoms.

Next comes Imuran, Cellcept, MTX -- there is no definitive way of telling which med will work for you, every case is different.
Posted 10/26/2014 10:40 PM (GMT 0)
Is there an option that will allow you to take it in the morning? Could be a simple solution to promote sleeping!
Posted 10/26/2014 10:52 PM (GMT 0)
Thought the only way it really works to raise endorphins is to take it between 9 pm to 3 pm.
That's what all the literature says.

"The usual adult dosage is 4.5mg taken once daily at night. Because of the rhythms of the body's production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime.

The therapeutic dosage range for LDN is from 1.5mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness".
Posted 10/29/2014 12:38 AM (GMT 0)
I actually read up on LDN and I'm excited about asking my rheumy about it. Hopefully it'll work for me!!!
I'm seeing him on the 6th so I'll let you all know....I'm hopeful :)
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