Will be starting LDN; correct starting dose?
 

Skip from Skip's pharmacy told me to start out at 1.5 mg. He said most people who quit taking it, quit because of side effects and have started out at too high of a dose. Yes, 4.5 mg is the optimal and highest dose they say to take. Some people only take 3 mg though. Good luck! As soon as mine gets here from Skip's, I'll be starting it ( again..I tried it for 3 months in 2005, but didn't notice any improvement. I think I started @ 3mg though that time.) I'm also on Copaxone too.

Desinie is right in that most people start at 1.5mg, and eventually end up on either 3.0mg or 4.5mg. Men and small women seem to have a harder time getting up over 3.0mg.

I started at 3.0mg and the side effects were not really bad. I had nausea (until I started downing a glass of water with it, which you should do when you are starting out anyway). I also had a mild headache for a few weeks, not much sleep for several days (but I still felt good during the day), and a "buzz" for about 30 min after I took it. I think that was it :p.

I've heard of others who've started on 4.5mg and had no problems, but I am very sensitive to meds so I probably should have started at 1.5mg.

The improvements were amazing for me though (symptom-wise), which I was not expecting. I definitely didn't mind those initial side-effects for the benefits I got. :)

I think some people go off because they don't get symptom improvement, so they think it isn't working. Not everyone gets symptom improvement, and sometimes the improvements are insidious (don't notice over several months, until you look back). The main "goal" of LDN is to slow disease progression and reduce relapses . . . symptom improvement should be looked at as a bonus that fortunately many of us have seen. :)

Good luck and feel free to join in on the LDN stickie to let us know how you are getting along:

http://neurotalk.psychcentral.com/thread50240.html

Cherie

If you aren't real sensitive, start at 3mg..... but you may want to get the script for increments of 1.5mg, in case you feel the need to go down a notch.

Good luck... and be sure to check into the LDN thread, to let us know how it goes for you..:hug:

Welcome to the LDN club, Stacy!

Yes, 1.5 is good to start with. It kinda messed with me (a few sx) and I nearly quit, but decided I hadn't made my best effort.

Now I take 4.5 mg. with no bothersome side effects. The dreams can be pretty vivid from time to time, though!

I do think it has made my blood pressure rise and I have packed on some more unwanted lbs. But it can also cause you to LOSE weight (naturally, that wouldn't happen to ME!)

Good luck with it. Take it easy and don't rush to increase your dose. Give it a month or so for your body to adjust between upping the doses.

[QUOTE=Twinkletoes;434898I do think it has made my blood pressure rise and I have packed on some more unwanted lbs. But it can also cause you to LOSE weight (naturally, that wouldn't happen to ME!) [/QUOTE]


Ugh, for I'm on two different bp meds since MS at age 32. Thanks!

This whole LDN thread has me wondering about asking the apocathary here if it's a possibility... research time I'm thinking!

Thanks everyone...
 

What makes you think LDN might cause you to be manic, Stacy?

(BTW, I'm very sorry to hear of your recent dx in addition to the MS. :(:(:( )

You have to do what you feel comfortable with, and I wouldn't want to try to twist your arm . . . but I personally know several people with Bipolar and MS who are responding well to LDN.

Cherie

It's scary. We really don't know what side effects we might have from any drug ( or not) unless we try it. It might be the best thing for us or it could be the worst. We're all on a trial and error basis with any drug we take,huh That's one of the things I hate the most about MS! I know LDN is better tolerated than most other options though I guess.

That's a shame, Stacy. I have never heard of LDN raising one's BP, but I don't blame you for being extra careful.

I know that here are some side effecs at the higher doses of Naltrexone, such as liver problems but not at the low doses we take for MS. Insomnia only happened to me, temporarily, when I went up to 4.5mg, too fast.

Talk to your Doc/Neuro about it and see what he/she says. I hope you can still give it a try.

I started at 3.0mg and the side effects were not really bad. I had nausea (until I started downing a glass of water with it, which you should do when you are starting out anyway). I also had a mild headache for a few weeks, not much sleep for several days (but I still felt good during the day), and a "buzz" for about 30 min after I took it. I think that was it.

Cherie,

I have had past drugs that didn't allow me sleep and made me manic. I'm now afraid of LDN for that reason and my bp and having two past mini-strokes because of my bp which started after the MS dx. I was put on bp medication at age 32.

BTW, I was told by my psychiatrist that people with MS are twice as likely to become bipolar than the general population.

Thanks for the information and for caring.

Stac

I understand your concerns, Stacy. :hug:

Admittedly, many people report some difficulty sleeping in the early days of starting on LDN, BUT for some reason that doesn't seem to mess us up. :confused:

I am not bipolar, but I needed a TON of sleep pre-LDN. There were many days that I slept for 20 out of 24 hours, until I got on it. Most days now, I survive and prosper on much less sleep than I ever got for years prior to going on this drug.

The first night I only slept about 3 hours, but I felt GREAT the next day. I hadn't felt "GREAT" in years, no matter how much I slept!!

One good thing about LDN, for anyone to know who might want to try it, is that it goes out of your system in about 18 hours. Hence, any side-effect someone might get from using it (and they are usually VERY mild) . . . by the day after stopping, all is back to "normal". :)

BTW, if the rate of bipolar is 1%, that still means only 2% (twice as many) of PwMS get it. I've heard the same thing; double. :(

Cherie