This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,
Recently I filled my 4.5 mg LDN script and I began taking it a week ago today. (Yes, I realize that many, many people start out on a lower dose, and I have questioned my neuro's reasoning already. I was told- "all of his patients are using this dose." I didn't like that answer, but figured I'd try it anyway). I have been experiencing severe insomnia on and off for the past 3 months. I presumed my neuro wanted me to take the LDN in the morning to avoid interfering with any of my already present sleep issues. But, I am here to report that my sleep issues have worsened since beginning LDN, plus the burning/tingling is frequently worse. I am fatigued all the time and wanted to ask if anyone else here is taking the medicine in the morning, and if so, what the results have been. Today marks a week for me, and I feel ready to throw in the towel.

S

Chicadee
RR MS dx 2007

I have been taking LDN for two and a half years. My neuro told me to take it at night (3mg). She told me it would make me tired. Ever since I started taking it, it is extremely difficult for me to get up in the morning. Before I started taking it, I would spring out of bed at 5 a.m., not anymore. Although, once I am up, I feel great all day. I feel the drug makes you sleepy. I never did take it during the day but I sleep through the night like a baby...but can't wake up .....What I am trying to say is...if it makes me feel this way while I am sleeping, I am sure it would make me feel this way while I am awake.

If I were you, I would back the dose down to 1.5mg and try again. Most people have more success with starting at a lower dose and then working up to the 4.5mg dose. Either have you doctor write you a new script for the 1.5 or I have heard that you can take the 4.5 capsule and dilute it in 4.5mL of water and then only take 1.5mg of a dose from that and then maybe refrigerate the rest and you will have two more doses. I have heard it tastes terrible diluted but just chase it with some juice. I would do 1.5mg for at least 2 weeks and then 3.0mg for at least 2-4 weeks and then go back up to 4.5mg. Good luck!

Thanks for your replies! I was starting to think I had asked too crazy of a question. I was thinking, but not articulating that I think/thought maybe I should try to take it at night. Better sleep would be very much welcomed from my corner of the world. I also think the idea of backing the dose down a bit might also help- especially since I am a relatively small female. I think my neuro was a little too aggressive with his one size fits all approach. I am going to call tomorrow and tell him my plan: to take at a night and to lower the dose a little.

Thanks again! This being incapacitated all day, dizzy and heavily fatigued has been awful. I'm looking forward to hopefully some new success!

S

I have been on LDN for 9 yrs. I started out with 4.5 but a few years ago went down to 3mg. I started to get stiff from 4.5) Do not take in the AM
Lower your dose to 1.5mg for a month, Then go to 3mg. This is all you may need. Try your 4.5, since you have them after a month on 3mg and see
if you can tolerate.If not stay on the 3mg. I was one of the original LDN patients with Dr. Bihari. He played with mine in the beginning, but did insist
it was to be taken between 9pm-2am only.