Julie' Low Dose Naltrexone Journal: Don't Double Up and Don't Skip Doses
Low dose naltrexone is different than the other disease-modifying therapies. The CRAB drugs (Copaxone, Rebif, Avonex and Betaseron) are long-acting immunomodulating drugs. Naltrexone is not. Naltrexone has the mechanism of blocking opioid receptors and (probably) stimulating the release of endorphins, which happens shortly after it is taken. What this means is that there are distinct immediate effects of Naltrexone that we can feel, mostly in the quality of our sleep and in unusually lucid dreams.
What this means is that it is not a good idea to skip a dose or to take two doses of low dose naltrexone (LDN). You will feel it. Here is my experience:
- Skipping a dose: This was an accident. I was tired and simply forgot to take my Naltrexone. I slept better than usual, but when I got up, I noticed that I was a little slower than usual and had a little less pep. I only remembered that I had not taken my LDN when my third cup of coffee was not pulling me out of my "fatigue fog," whereas the day before, I was ready to tackle my day halfway through my second cup. By lunchtime, I was more tired than I had been in a very long time, which resulted in an hour-long nap that did nothing to refresh me. The rest of the day continued with a slow downward slide into complete and utter inability to think or function well - far worse than it was before I started the LDN.
Taking my LDN that night, I mistakenly thought that I was fixing the problem and everything would be back on track. Not so. It was like I was starting the LDN back at square one, with teeny patches of sleep coming, only to be accompanied by horrible, lucid dreams - all the worse because I was not expecting them and was unprepared for them. It took about 5 days to get back to where I had been.
- Taking Two Doses: This one was also an accident. I was lying in bed reading, when I "remembered" that I had not taken my LDN. The capsule was halfway down my throat when I recalled that I had altered my bedtime routine and taken it earlier than usual, before watching a movie. It had pretty much the same effect as I described above, when taking a dose after skipping one the night before. Bottom line - no sleep, freaky dreams, bad idea.
Do any of you have any experience with forgetting a dose or doubling up? Even better, how do you all remind yourselves to take your LDN on time every night? Help us out and leave a comment below.
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Doc Julie….your willingness to share your experience is appreciated…the effects of the LDN scare me…what does the research say on the long-term effects of usage?
Julie,
I haven’t experienced any weird dreams. My doctor did give me a sleeping pill, but I have to say-my life has improved. I recently ran a fever. I was so scared that the MS flare up would happen but it didn’t. Thanks for sharing and giving me the courage to ask for LDN from my neurologist.
I have been on the LDN for a month – the bad side effects mostly are gone (I have a very active imagination so the lucid dream thing never has played into this for me) but how long before I note any real good, i.e., more heat tolerance and I wobble like a weeble right now – I didn’t used to wobble that badly before I got on the LDN – I remember reading where a few of the MS symptoms would flare up and be worse for a bit, but how long??? can anyone help me? My first two weeks on LDN, I honestly thought I was in he double toothpicks and then I just felt weak and had issues walking – now it’s just pretty much issues walking (and balance) and heat – everything else seems to be skimming along nicely – and yes, I have progressive-relapsing MS and was blessed enough to have my second opinion neurologist be a specialist in MS and one innovative man, so he is a KEEPER for me but while he did write me the script for LDN, he freely admitted he was not as familiar with it and how it dealt with MS, so……any help out there???
i have been taking LDN for about three weeks an dhave not experienced any bad or lucid dreams. in fact, my sleep pattern has improved to th epoint where i do not lay there for hours trying to sleep.
i have also found by going on a mini vacation that i was able to go into the ocean, the pool and take longs walks along the beach without the heat shutting my body down as it usually does.
i have not noticed any difference in my gait…all in all it has been a good experience and one that i am very comfortable with and grateful to my doctor for being open to new things rather making the pharma companies richer for medicines that did not work for me.
hi Julie
Yes I applaud your efforts at trying out this “new” use for an old drug, of which I have been trying for the last five years at the 3 mg level. I to have doubled up or forgotten to take my pill some nights after all we are only human.
The good news is as you have found out very soon you recover to where you were before you made that mistake, a little word of advice from a long-time user if you get more than 30 pills in a batch as they will degrade I get around 90 pills at a time and if they are not placed in the refrigerator by the time you get to the last few days they do not do anything anymore and it is really noticeable.
I take-out about a weeks worth and put them in a different pill bottle on the headboard of my bed and take one as I hit the sack, as time goes on you soon fall into a very noticeable pattern only to be interrupted by daylight saving time coming into the picture, but by very slowly over the course of the week delaying or advancing the time of the pill taking you can soon get on track.
The nice thing about LDN is that it is fairly forgiving after you have been taking it for years. My doctor does constant liver testing as I’m also on 4-AP. and one of the contraindications of 4-AP, if taken to excess is a slow poisoning possibly liver failure. so far I am on a half dose and only occasionally add one extra pill per day as necessary.
For me both LDN and 4- AP have been indispensable as I have primary progressive MS and there is no drug for that.
Keep the faith and good luck I enjoy reading your episodes.
Reg
I have a recurrent reminder set up on my mobile phone, so my alarm goes off at 11pm every night and i take my ldn. That way i never forget!
Doctor Julie: I would recommend getting a weekly pill holder and keep it next to your bed or by your toothbrush, wherever you usually take it each night. This way, one look and you’ll know if you’ve taken it. I won’t help for reminding you but it will keep you from taking a double dose. Also, to remember, link taking it with something else you routinely do, for instance like brush your teeth or flossing or something else you consistently do before going to sleep.
I was going to mention setting an alarm on your cell phone, I do for both ldn and copaxone, but gayle beat me to it. I never forget because the alarm keeps going off !
Is there any advantage in taking the LDN in the evening verses during the day? I take mine just before breakfast. On some days I get very tired about 3 hours later, for 45 minutes or so. Could the time of the dose be the cause?
Julie…
It’s key that you and your audience hear the interview with Dr.Zagon that Mary Bradley did this week.
In it, Dr. Zagon explains that taking LDN before going to bed is not any more effective than taking it any other time of day. He recommends that those who have dreams take it in the morning instead.
http://www.blogtalkradio.com/Mary-Boyle-Bradley/2009/06/23/The-Mary-Bradley-Show
Cheers!
Joe
I started LDN 2 weeks ago and I am thrilled with my progress. I have secondary progressive MS and have been on Copaxone and Tyysabri. I did not respond to either. LDN has flipped a switch in my body. I feel great! I am walking without my cane and walker for the first time in years. I have less pain and I sleep better than I have in a long time. I have no side effects at all. Thank you for sharing about LDN. I had never heard of it until I read it here and I immediately asked my Neurologist for it. She felt I would be a good candidate to try it and we both are thrilled with the results.
Kathryn,
I too experienced flare ups and even some new mild exacerbations when I first started on LDN (it was scary), eventually I made it through and after about 7 weeks everything was back to normal and improving every day.
Julie,
Although it may be unsaid at times, you have the sincere gratitude of many many people for having the courage to publicly chart your LDN experience. It is an immense aid to get the word out about an older, little known drug that needs widespread acceptance. I am just around the corner from starting my first dose – and in the meantime have used the yahoo group, the original lowdosenaltrexone site, the mary bradley radio programs and your updates as starting points (there is a lot out there once one begins to dig). Every human being should be entitled to a full quality of life – and my quality of life is exactly what I hope to improve with low-dose naltrexone. Among many other things, I share your hardship of not being able to go out in the sun without severe repercussions. If it just helped that little piece, it would be worth its weight in gold.
I also appreciate that you are telling your story from an unbiased viewpoint, neither pro nor con LDN. Many thanks to you.
p.s. I ditto the alarm sentiment for taking rx. My phone goes off and a computer reminder pops up and I also do the day-labeled med holder on the nightstand.
To Yourverity – thank your words!!! My week 7 is July 11th – I will hang in there and trust that this will be a good thing!!! I hear so many positives that I don’t want to NOT keep the faith but like you said, it is SCARY but your words have given me hope there is a light at the end of the tunnel and that this is a GOOD thing!!!!! Thank you!!!
I’ve never really had any unpleasant side effects from LDN. I once RAN OUT of LDN and couldn’t get any for over two weeks; after a few days, I had a major relapse that left me with twice as many symptoms than ever. Since I have a LOT of bedtime meds to take, it’s less likely that I’ll forget my LDN; I set up my meds in trays, one tray for morning and another for bedtime, setting up 2 week’s worth at a time. Taking my handful of meds and supplements is a BIG production. However, I HAVE fallen asleep without taking any bedtime meds(including the LDN) about once or twice a year over the last 4 years, but nothing happened.
Because I label each day’s meds, I’ve never taken a double-dose of LDN.
I am interested in LDN, but as I get closer to switching to it, I have more and more questions…
flora68, you say you ran out of LDN and then had a major relapse. I would like to know if this is typical. In other words, does taking LDN force you to always take it for risk of another flare up immediately after you stop or if you run out or whatever?
I guess all the MS medications require that you forever take them. But does LDN make it more imperative to not screw up? MS sure does suck!
I currently take Rebif and have not had any exacerbations since starting it (I was having them every 6 months before starting it), so I am concerned about stopping Rebif to start LDN or any other treatment. Currently my MS is pretty manageable on the Rebif, but I always wonder if it would be even better on LDN.
Sometimes I wonder if avoiding all medications is the best answer, but then I hear how MS progress IS slowed by these medications.
What to do? Argh!!!
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Moved this comment from the day0-1 blog entry, as it is about double dosing. I started 3 mg a month ago, with no really noticeable symptoms other than initial irritability that went away after I backed down from 3 mg to 2 for three days. Back up to 3 for the rest of the month, I did not feel any significant improvement in numbness or stiffness, but since I didn’t feel any worse, just kept at it. Last week I took two of my 3 mg by mistake one night, and had a fabulous day the next day, feeling like a new person. I did not double dose again until last night when I decided to try it on purpose. Today I feel like a zombie. Guess I’ll see if I can have my dose altered up from 3 mg to 4 or 4.5 and try that for a while. But why is over 5 mg not recommended?
–Steph