Last week I finished my 3-month supply of 3 mg low-dose naltrexone capsules. My neurologist started me on this dose as it is recommended to start at 3 mg or less at the beginning. This is because LDN can cause spasticity in some people that are prone to it and 3 mg seems to be a manageable dose for everyone – people with spasticity eventually even out at this dose and stay here.
It turns out that I didn’t have any problems with spasticity when I started LDN (my calves and, weirdly, toes cramped a little for the first couple of days, but that went away). What many people do in this case is go up to 4.5 mg, which is widely considered to be the “optimal” dose. Usually the increase is within two to four weeks, but I was doing so well on my 3 mg (and I had the full 3-month supply in hand) that I just hung out at that dose until my supply ran out.
Someone wrote to me to ask why I would even want to increase the dose if I was doing so well. Good question. I guess I wanted to see if I could do even better. I figured that there must be a reason for the 4.5 mg and that the increase was so tiny that it couldn’t hurt. (Keep in mind that when naltrexone is used for its FDA-approved indication of helping people addicted to narcotics come off drugs that it is prescribed at levels of 50 mg to 200 mg.)
I have to say that the first couple of days after my increase were kind of rough. I didn’t sleep the first night, took Benadryl the next night, which didn’t help much and left me hung over. Eight days later the sleep is getting better, but the lucid dreams have returned – and these seem way scarier than they did on the lower dose. I can only hope that this goes away after a month or so or at least get less vivid, like they did before.
My first four or five days were also not that good during the daytime. My lack of sleep surely didn’t help, as I felt like I was in a daze. I also was nauseated and had a headache much of this time.
However, after that I can say that I felt better and am continuing to improve each day. It is over 95 degrees where I live and my tolerance for the heat is much better than it was on the lower dose. I can even outlast many people who don’t have MS and not be bothered so much. My fatigue seems to be about normal for someone who wakes up about four times a night freaking out over a weird dream, but my energy level is much better than it was before I started this.
I’ll report back in a couple of weeks, but I think I am glad I added that 1.5 mg. Do any of you have similar experiences (or different ones)? Please let us know in the comment section below.
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Julie at 4.5 mg, most days I feel great(been at this dose a mont). There is a BUT I do have sleeping issues. I have also had some very vivid dreams but fortunely not every night.
I take something to help sleep, but usually wake up every few hours. The trade off has been the energy to keep going through most days and a 10 lbs weight loss. There are days that I crash by 5:30pm and sleep until 7:00. What does that do? keep the cycle going….
In the end, LDN has improved my life so much that I will keep taking and bare through the side effects
Hi Julie – I am on the 4.5 and I have not yet hit the three-month mark so I am still just “dealing” with the heat and I still am walking like a weebil (didn’t this badly before the LDN) and am hoping that the three-month mark will give me relief in both those areas – everything else is going absolutely wonderfully – I can’t stress enough how well and YES, I jumped in immediately at 4.5 and thought I was in he double ll – headaches, nauseau and everything you can imagine – but I always my whole life had whacky dreams so that didn’t play into it at all and still doesn’t – and I have lost over 10 pounds and I eat the same or more so that was a bonus.
Again, I think I did the best thing jumping in at 4.5 from the get-go – it took about 2-3 weeks to get “right” from it but given all the benefits, well worth that hell although I sure would like to get more heat tolerant and walk a whole lot better or at least back to where I was before the LDN (not that it was that great – smiles).
Hey Julie,
I so glad to read about your journey w/LDN. I have been taking it for about 3 years. My husband was skeptical until he learned that a Doc was taking it.
Sorry, I need to go know.
Reading your success makes me want to try LDN again. I used it for more than a year, got through the worst of the dreams stage, had great improvement in bladder control. Then the muscle spasms in my right foot in bed started, I tried to wait them out, I also tried baclofen a muscle relaxant which was worse than the spasms. After a month I couldn’t stand them any more and I stopped the LDN. This was a great disappointment for me and my PCP who had never heard of LDN until I presented him with all the research. He has since prescribed it to other patients who have run out of choices to treat MS.
Hi,
I’ve been on LDN for 3 weeks, and last night doubled my dose to 4mg on the way to the 4.5 NONE of my docs would prescribe it until I went to the psychiatrist. He said: Yes, why not… what could it hurt. The biggest change for me is the constant chronic depressive spiritual ache I’ve suffered from “forever” – is gone. I told my PCP: “Hey, years of therapy and anti-depressants and nothing has ever touched the constant sadness I’ve felt! IF this is all LDN does, it’s a miracle pill!” He agreed. My Neuro is very “off” the idea and he’s going to get a mouth full when I see him in 2 weeks. WOW. Yes, the dreams are amazing; but I feel it’s my subconscious “wringing out” every cell in my body. Hopefully, there’s another side to these dreams – but I’ve always been a dreamer so I can handle it but they’ll knock your socks off. Overall, I’m feeling physically better too. I’ll keep you posted! It’s still very new to me.
Kimmie
I too am very glad you have kept on trying the LDN after six yrs. now I can honestly say never have I had any adverse reactions to an increase in doseage or decrease but my pills do get staledated at times and boy do I notice.
Usually around my third trip to the washroom in the last hour! ;o(
I have been taking 4.5 mg of LDN for the last six years, after having persuaded my GP to perscribe it for me as my neurologist at that time was not supportive..so here I am 6 years later and still taking my LDN dose faithfully each night. I have never had any difficulty sleeping or wild dreams related to taking LDN, but I think it has kept me from progressing as badly as I might have had i not been on it…and frankly, i am afraid to stop taking LDN, or even missing one nightly dose! Funnily enough, my same neurologist is now prescribing LDN to many of her patients! The fact that many other MS patients taking LDN experienced wild dreams just reinforces for me the fact that MS patients all suffer/react to their MS differently.
Does anyone taking LDN live in Canada?
Dear Dr. Julie, I am a 42 year old mother of 1, married and with a full time professional and very busy career. I was firmly diagnosed with MS on July 2, following my second major relapse that started on March 10 of this year, triggered by a cruise ship vacation(?)and ironically seems to have ended this past weekend, a weekend that I spent mainly researching LDN. My first instance was optic neuritis in 2002. Following this second situation, my Neurologist suggested I go on Copaxone and after much hesitation I went and got the medication, it is now in my fridge. I do not want to take it because of all the research I have done since July 2 on this drug and the hundreds of user opinions of it that are out there. They all seem to be rating it around 5 or 6 out of 10 and there seem to be a lot of allergies that develop and also some situations where the MS just attacks very badly if they have to go off the drug or choose to go off it. Meanwhile LDN gets consistent 9 or 10 out of 10 ratings? I am a very healthy person other than the typical MS stuff over the past 7 years ie brainfog, pins and needles etc. and I really do not want to mess with my system through injecting a man made polymer compound into myself. I was considering just taking a chance on no meds, until I started looking into LDN. I did not know you had started taking it…but I am relieved that you are…you are obviously an intelligent, educated person with credentials that my Dr. will respect. I would appreciate conversing with you if you have a moment to reply to me. Thank you for what you are doing to help people. Sincerely, Dawn in Canada
When any of you say you “feel better” with LDN…what do you mean exactly? Does it mostly just help with the heat tolerance and fatigue? Is there any relief from pain? Specifically I have burning in my tailbone area, legs and feet, and I also have “pins and needles” in my legs. Does LDN provide any relief with pain? Thanks.
Julie,
Where can I find your LDN journals from day 2 through upping the dose?
dcrr – I just added all of the links from the beginning until now (including the one that I just posted today about Month 4. Hope this gives you the info you are looking for.
[... - ms.about.com is another relavant source of information on this subject,[... -
we enjoyed reading this article, you have a wonderful writing style! I have forwarded a link to my dad, and will definately be returning back for more reading.
Low Dose Naltrexone has been great so far, have been on it for about four months; am using it along with another IV medication, hope to be able to quit using the IV med within the year. Thank you for providing this forum.
ty 4info on ldn, my mri’s this 4yrs have shown no new lesions. i attribute this2 3mg.ldn, minocycline, and no injections. smoking is finally coming under control. why have all my existing symptoms continued progressing? probably combined effect of smoking/fatigue/stress. could 4.5mg.ldn help?…