Experiences with Low Dose Naltrexone

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

LDN

Postby SandyK » Mon Nov 09, 2009 5:52 pm

Tonight will be my first full week. I have noticed that I have warmth in my right foot.
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Postby Mutley » Thu Nov 19, 2009 4:55 am

LDN definitely helps my irritable/urgent bladder. I had hoped it would do more but just reducing my bladder problems is a massive thing. At night I would always go to the toilet at least 5 times a night, and 10 times a night was quite common. But now it’s usually just once or twice, and occasionally not at all.

I think that getting the dose right is key though. For me it was the sort of thing I had to build up slowly and my preferred dose is now 3.5ml (3.5mg) per night. If I take too much I noticed that my mobility suffered a bit and I felt more tired than normal.

The research I did at the time also suggested that you are better off taking it in liquid form as some of the filler material used in the tablet forms wasn’t always up to scratch.

I originally got my script via e-med (http://www.e-med.co.uk) and the drug from Dicksons Pharmacy in Glasgow UK, but now that my GP has heard about my results she now does the script for me bless her.

Hope this helps and good luck to everyone!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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LDN experience

Postby SandyK » Thu Nov 19, 2009 7:46 pm

This will be my 16th pill tonight. I'm not even having the experience of dreams. After I finish this bottle of 3 mg I am going to 4.5 mg. I will keep using it, but after all I've read from people seeing changes right away it is kind of a downer to think it may not help me.
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Postby TvG » Fri Nov 20, 2009 12:36 am

I'm over 6 weeks on 3mg LDN now and still notice more energy (better dreams) but unfortunately also much more stiffness/spasticity every week.
It's a hard decision to change/lower dose or quit completely.

Are there more people with PP with increased symptoms after 1.5 month, continued and now are glad they did?
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Postby Mutley » Fri Nov 20, 2009 1:49 am

Apparently men don’t tolerate the higher doses as well as women do and some say that 3.5mg is the top end for men. I think it’s a trial and error thing really. It took me about 3 months before I cracked it.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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My two cents

Postby Aaron » Wed Dec 02, 2009 8:14 am

Hi,

I thought that I would chime in. I have been takin LDN since October. I started with 1mg capsules and felt stronger than I have felt in a long time. :D
I then assumed that more would be better, and had my neuro prescribe me 3mg, in liquid form. Since taking the 3mg, I have found myself regressing. :x
I just ordered another batch of 1 mg capsules, so we'll see if that brings me back to where I was.

I was looking forward to the vivid dreams, but I haven't experienced them.

By the way, when I asked my doc, (Dr. Calkwood in Mpls), for a script, he was leary about its effectivenes, but he said, "Well it can't hurt you," and wrote it up.

As long as there is a compounding pharmacy near you, there shouldn't be any problem getting it.
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HELLO---

Postby leetz » Wed Dec 02, 2009 9:31 am

TOOK LDN FOR APROX.6-8 MONTHS....THE ONLY IMPROVEMENT THAT I HAD WAS LESS PAIN LEVEL.......TRIED ALL MG RANGES FROM 1.5-4.5MG..
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Postby Loobie » Wed Dec 02, 2009 9:51 am

Hey Ton,

Apparently, an initial increase in spasticity is not uncommon.

Here's my experience:

DON'T TAKE IT DURING THE DAY.

I won't do that again. Made me feel like shit every afternoon. After talking with the man Skip, I have restarted in the evening again and it's much better. Still waking occasionally at 4:00 or 4:30, but amazingly don't feel unrested (I get up at 6:00 anyway). So far I like it.
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Increase dosage

Postby SandyK » Thu Dec 03, 2009 12:35 pm

Last night I went from 3 mg to 4.5 mg. I'm still not having any dreams or noticing anything different. It has been a month. I will finish this month and than probably stop. Why pay for something that isn't helping?
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Postby tzootsi » Thu Dec 03, 2009 4:38 pm

One month is not nearly enough time. LDN takes 3 months to really start kicking up the endorphins. Also, for most people, LDN's biggest benefit is no progression, not overnight improvements. I would definitely keep it up if I were you. It's very inexpensive, and pretty harmless. Have you watched any of Skip Lenz's LDN lectures on youtube?
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Postby ErikaSlovakia » Fri Dec 04, 2009 12:29 pm

I have been on LDN since November 2008. I had 2 relapses in 2008 in 2007 as well.
I had really big problem with fatigue in 2008.
My symptoms were even stronger the first day with LDN. I was starting to get better - to have more energy since the second day. My fatigue was getting better.
I was taking 3mg the first 14 days and after 4,5 mg always after 9 pm. I have not had any strange dreams.
I am VERY happy with LDN.
I do not plan to stop that soon.
No relapse since I started with LDN - it means for a year.
I order it via e-med as well.
No way I can get it in my country :cry:
I have never been on any DMDs.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby SandyK » Mon Jan 04, 2010 10:44 pm

Going on month 3 and still changes.
Diagnosed 1994, Self EDSS is 6.5
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Postby Algis » Mon Jan 04, 2010 11:27 pm

LDN is the best thing I ever had for my MS.
It took maybe more than 3 months for me to notice, but I mostly see the difference if I miss a day - I feel much weaker and I need at least 2 more days to recover...
Very cheap and no any side effects; so it is a yes (for me). But everyone is different.

Good luck! :D
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Postby SandyK » Tue Jan 05, 2010 9:41 am

My post should have said no changes. No dreams, no insomnia, and not feeling any better. I'm not feeling worse!
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Postby ariehs » Tue Jan 12, 2010 5:57 am

I started taking LDNs when I was first diagnosed - within a few weeks. I didn't notice any change (an occasional dream, that's it) but I kept taking the pills, as there seemed no harm in them.
I never went on any of the CRABs medications, as I wasn't diagnosed in the same country as where I lived, and finding a local doctor took a long time. By the time I did, I was waiting for a stem cell treatment.
After the treatment, I stopped taking the LDNs. It seemed silly. Now, I will note at this point that it takes 6 weeks or more for results from a stem cell treatment to start to show.
In two weeks my spasming increased from a rare event to a constant problem, and I started falling so often while walking that I reluctantly bought a walking stick to keep on me.
Once I realized that this might be a change because I stopped talking the LDN pills, I started again. In days my spasming was down to even less than it had been before, and while I am still carrying the walking stick with me, my legs seem to be as reliable as they were before the infusion.

I didn't realize how much the LDN was doing for me. Where I thought it was just doing no harm, I now know that it was helping me significantly.
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