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LDN-Anyone here use?

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Posted 1/5/2015 6:54 PM (GMT 0)
LDN-low dose naltrexone--perhaps somewhere here on a thread, but couldn't find. Anyone here use this & if so, how well does it work, how much, where do you get? thx, jo
Posted 1/5/2015 7:13 PM (GMT 0)
Hi Jo—

This has been discussed recently —tried to find those conversations and I think I have (the search function is not great). I really like this stuff—it has its limitations but was one catalyst that helped me finally get sleep at night. Let me know if you have q's-

www.healingwell.com/community/default.aspx?f=30&m=3239020

www.healingwell.com/community/default.aspx?f=30&m=3269763

www.healingwell.com/community/default.aspx?f=30&m=3030478

-p
Posted 1/5/2015 8:00 PM (GMT 0)
Ask away ;)

-p
Posted 1/5/2015 8:26 PM (GMT 0)
I'm on ldn since May 2014, I'll be glad to answer questions too.
Posted 1/5/2015 8:43 PM (GMT 0)
Hi Marie—

What dose are you currently taking? Any changes in your symptoms or plateau?
-p
Posted 1/5/2015 9:03 PM (GMT 0)
My highest dose was 3,5mg, it was controlling the pain well (not the headaches and neuropathy, but the muscle and joint pain. First the muscle pain, after about 3,5 months I felt a change in the joint pain).
Beginning of september, I fell and broke my spine, I had to take a break from it because of the other painmeds. Now I'm on 1,5mg, building up.
My joint and bone pain decreased, overall muscle pain considerably.
I'm not sure about more things, because there were so many sudden changing factors between september and now: I stopped working, I sleep and rest a lot now.
Posted 1/5/2015 9:13 PM (GMT 0)
I have been on LDN since May 2013. This is the ONLY drug I wanted when I was diagnosed with MS and later found out it is used for Lyme. Both one in the same IMO. I used 1.5 for 3 weeks, then 3 for 3 weeks and have been on 4.5 since. 4.5 is my sweet spot. It relieved my fatigue, dizziness, numbness, etc... I believe it has done the most for me beyond anything else. Also, my latest MRI shows that my brain lesions are healing, which is uncommon to heal that fast when others' lesions usually never heal.

I would recommend it. Insurance will not cover it, it's cheap to begin with. I pay 328 a year. My insurance did reimburse me the past 2 years, but they just sent me letter stating they no longer cover compounded medication. Again, not a big deal because it is only $328 a year for the 4.5 dosage.

You can also get the regular 50mg pill from a typical pharm, but then you have to dilute it and use an eye dropped to administer. I didn't find that quite useful considering you are guessing that each drop is 1.5mg exactly and the real way to use LDN is to discover what level your body likes.

A family friend has been on Copaxone for MS for 7 years, but she is finally giving LDN a chance after her last relapse.
Posted 1/5/2015 9:21 PM (GMT 0)
My insurance does cover part of it—It's about $29/month so $1 per dose, a little more than iLyme. Ironically, you can buy it at regular pharmacies but with my insurance it's twice as much. My regular pharmacy had the same pills—no dilution.

So glad to hear you are also doing well with LDN, iLyme—and have turned your MS friend onto it. From everything I've read it's better and less invasive (and cheaper!) than other MS medications.

-p
Posted 1/5/2015 9:27 PM (GMT 0)
well...... the average MS med is 52,000 a year versus LDN at 328 a year. Obviously less invasive considering 7 MS drugs are by needle each day. Also, most (I mean all) MS drugs reduce the immune system into nothing. Most patients get some weird cancer a few years into treatment, the pharm brochures even state that.

With all that said, it was a no brainer for the price, pain, and outcome.

HappyJo: if you have no compounding pharm near you, Skip's Pharmacy in Florida does a great job, average price, and uses a good filler.
Posted 1/5/2015 9:31 PM (GMT 0)
Marie—

I had forgotten about your broken back—horrific. So glad you're recovering.

I was curious because I, too, am at 4.5g and either I've plateaued or I need to shift a few other things in my protocol. I have slipped in other areas and need to increase my detox so that may be the problem.

I love this stuff and don't want to stop taking it.

-p
Posted 1/7/2015 10:54 PM (GMT 0)
jo-
you're not starting off at 4.5g are you? The typical introductory dose is 1.5g—and you work up another .5g one month at a time.

Sorry—I just posted that and then re-read the last part of your post. Yes, you do need to titrate up. No worries, just get a script for a much smaller amount (keep the 4.5g for when you are ready for it). But even at a small dose, you still might have to allow your body to get used to it, which could take a week or so. I found that the muscle pain, heaviness, agitation, spasms and sleep disturbances got a little worse at first then ratcheted down with every increase in dosage. It was well worth the rocky journey.

Let us know how it goes—

-p
Posted 1/7/2015 11:18 PM (GMT 0)
I read an article about LDN written by Elaine Moore and she stated that LDN can work just as effectively if taken in the morning. Apparently, changing the dosing time prevented the sleep disturbances many report with bedtime dosing.

I see my LLMD tomorrow and will be working towards getting a Rx. I even have Elaine's article about LDN dosing so I'll get a Rx for 1.5mg :)
Posted 1/7/2015 11:29 PM (GMT 0)
Yes—
It can work in the AM. Also, if you just can't get past the hump, you can also just take it earlier in the evening. The main reason I started taking it was the pain and agitation I was experiencing at night, which was compromising my sleep, which would then would exacerbate other sx during the day. Eventually, I found that I actually sleep better now that my body has acclimated to it if I take it at 11pm. Once I pushed through the sleep issues, it eventually paid off and maybe my issues weren't as bad as other's.

But I have read other's accounts and it took them longer to titrate up, took them longer to find the best time to take it so that they had the good results without compromising sleep, etc.

That Elaine Moore article is a good one. Hope you can find your sweet spot! Good luck! Let us know how your experience with it goes.

-p
Posted 1/7/2015 11:30 PM (GMT 0)
In fact—

Thanks for the reminder cd3764, I think we should post a link to the article:
elaine-moore.com/Articles/LowDoseNaltrexone/BenefitsofLowDoseNaltrexone/tabid/112/Default.aspx

-p
Posted 1/8/2015 2:28 AM (GMT 0)
Well, your doc should have understood the dosing. I'm glad you're on top of it—so many people try it at too high a dose and give up, understandably. I sincerely hope it's successful for you.

yes, among the several things I can no longer do I used to dance. So I picked a screen name that reminds me of more graceful time and peaceful mind. If nothing else, I would love to just walk the way I used to. ;)

-p
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