Binkie4
Senior Member (Voting Rights)
An earlier thread
https://www.s4me.info/threads/ldn-seems-to-be-working.8936/
Edit: corrected thread
https://www.s4me.info/threads/ldn-seems-to-be-working.8936/
Edit: corrected thread
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Low-dose Naltrexone articles and experiences
- Thread starter Kalliope
- Start date
sebaaa
Established Member (Voting Rights)
I was just taking it a while ago but I stopped because it didn't help at all. I took it for about 10 weeks, slowly working up from 1.5mg to 5mg. I used this website to figure out the duration. On that website Jarred Younger states that "it can take 8-10 weeks to determine if you will respond to the drug. Don’t stop taking it before then."
InitialConditions
Senior Member (Voting Rights)
andypants
Senior Member (Voting Rights)
LDN was mostly helpful in reducing chronic, vague neurological pain for me. It might also have expanded my energy envelope a tiny bit, but then not feeling like every nerve ending is low key burning all the time would probably do that too!
I started slow and built up. The first 10 days or so the pain got worse, before suddenly getting better one day. I remember having more sleep issues during those first days as well. It did not help with the underlying causes but camouflaged the pain, so I had to remember that I still couldn’t do more even if I felt better most days.
I experimented a little with dosing and timing and eventually figured out that taking 0.5 mg morning, midday and afternoon worked best for me. The pain reducing effect would taper of after about 4 hours, so I spaced the dosages at approximately 4 hours apart but avoided anything in the evening as that would make it harder to sleep. Increasing dosages above 0.5 mg at a time made no difference (or possibly made the pain worse, I can’t reliably remember).
I stopped taking it after a year or so. I thought the effect might be wearing off and decided to take a break. A break also seemed like a good idea because my stay at the rehab clinic was coming up and I didn’t want to fool myself into thinking I could tolerate more than I could (especially with people encouraging you to participate). After the rehab I was too reduced and worried about getting approved for my disability pension and didn’t have the energy to get my prescription renewed. The cost was also an issue at the time since I was worried about not having an income very soon.
I got better and had my pension approved, but since I’m pretty stable atm and have other health related projects going I have not made the effort to get a new prescription. In summary I thought LDN was helpful, but not revolutionary. I might try it again later, if the timing is right
I started slow and built up. The first 10 days or so the pain got worse, before suddenly getting better one day. I remember having more sleep issues during those first days as well. It did not help with the underlying causes but camouflaged the pain, so I had to remember that I still couldn’t do more even if I felt better most days.
I experimented a little with dosing and timing and eventually figured out that taking 0.5 mg morning, midday and afternoon worked best for me. The pain reducing effect would taper of after about 4 hours, so I spaced the dosages at approximately 4 hours apart but avoided anything in the evening as that would make it harder to sleep. Increasing dosages above 0.5 mg at a time made no difference (or possibly made the pain worse, I can’t reliably remember).
I stopped taking it after a year or so. I thought the effect might be wearing off and decided to take a break. A break also seemed like a good idea because my stay at the rehab clinic was coming up and I didn’t want to fool myself into thinking I could tolerate more than I could (especially with people encouraging you to participate). After the rehab I was too reduced and worried about getting approved for my disability pension and didn’t have the energy to get my prescription renewed. The cost was also an issue at the time since I was worried about not having an income very soon.
I got better and had my pension approved, but since I’m pretty stable atm and have other health related projects going I have not made the effort to get a new prescription. In summary I thought LDN was helpful, but not revolutionary. I might try it again later, if the timing is right
Helene
Senior Member (Voting Rights)
I took 4.5 mg at night for a couple of years. Thought it was helping with sleep, perhaps mood and restless legs. When I went off it a few months ago to find out I did have more discomfort in my legs for about a week or two but then went back to normal. So I'd say if it did help for a while it wasn't helping any more. My impression is some people seem to report significant pain relief.
Kalliope
Senior Member (Voting Rights)
Thank you. This was interesting!
Good to know. Thanks! I'm sorry it didn't work for you though.
Thanks @andypants Interesting to hear your LDN journey. Glad to hear your pension got approved and that you're a bit stable at the moment. Good luck with your other health related projects!LDN was mostly helpful in reducing chronic, vague neurological pain for me. It might also have expanded my energy envelope a tiny bit, but then not feeling like every nerve ending is low key burning all the time would probably do that too!
I started slow and built up. The first 10 days or so the pain got worse, before suddenly getting better one day. I remember having more sleep issues during those first days as well. It did not help with the underlying causes but camouflaged the pain, so I had to remember that I still couldn’t do more even if I felt better most days.
I experimented a little with dosing and timing and eventually figured out that taking 0.5 mg morning, midday and afternoon worked best for me. The pain reducing effect would taper of after about 4 hours, so I spaced the dosages at approximately 4 hours apart but avoided anything in the evening as that would make it harder to sleep. Increasing dosages above 0.5 mg at a time made no difference (or possibly made the pain worse, I can’t reliably remember).
I stopped taking it after a year or so. I thought the effect might be wearing off and decided to take a break. A break also seemed like a good idea because my stay at the rehab clinic was coming up and I didn’t want to fool myself into thinking I could tolerate more than I could (especially with people encouraging you to participate). After the rehab I was too reduced and worried about getting approved for my disability pension and didn’t have the energy to get my prescription renewed. The cost was also an issue at the time since I was worried about not having an income very soon.
I got better and had my pension approved, but since I’m pretty stable atm and have other health related projects going I have not made the effort to get a new prescription. In summary I thought LDN was helpful, but not revolutionary. I might try it again later, if the timing is right
Thank you. Sorry it wasn't very helpful for you. Seems clear it's not a wonder drug for most. Hope we'll learn more soon whether there might be a sub group that may have some profit from using it.
Dechi
Senior Member (Voting Rights)
@InitialConditions I tried LDN for about 5 months, slowly increasing the dosing. At the end I was taking 4 mg. My doctor wanted me to go up to 5 mg but I couldn’t, as I was having constant headaches and I very sleepy at certain periods during the day.
Since I wasn’t seeing benefits and was having side effects, I stopped. i still have some though and plan on trying again some day.
pteropus
Senior Member (Voting Rights)
i love my LDN. after GET & years of extreme photosensitivity - then very slow increments of LDN dosage, i was able to go outside in bright sunshine, without pain. blue sky, trees, birds flying, all the lovely things. it was a very happy day.
i started on 0.15mg, slowly worked up to 3mg, then (over years) up to 6mg. i've tried slightly higher doses, but not much additional benefit.
i started on 0.15mg, slowly worked up to 3mg, then (over years) up to 6mg. i've tried slightly higher doses, but not much additional benefit.
Anna H
Senior Member (Voting Rights)
I tried it last year, started with 0.5 mg. While it interfered a bit with my sleep, I initially felt like I tolerated it and was hoping it would have a positive effect. Unfortunately I developed severe depressive symptoms after a few weeks and had to quit. I read up on that reaction and apparently a certain percentage experience depression as a side effect and the recommendation then is to stop taking it immediately.
So that was a bit of a bummer, but glad I tried it anyway, in case it would have worked for me. Good luck!
So that was a bit of a bummer, but glad I tried it anyway, in case it would have worked for me. Good luck!
Kalliope
Senior Member (Voting Rights)
That sounds awful. Thanks for telling though. Good to be aware of! I'm sorry LDN wasn't for you.I tried it last year, started with 0.5 mg. While it interfered a bit with my sleep, I initially felt like I tolerated it and was hoping it would have a positive effect. Unfortunately I developed severe depressive symptoms after a few weeks and had to quit. I read up on that reaction and apparently a certain percentage experience depression as a side effect and the recommendation then is to stop taking it immediately.
So that was a bit of a bummer, but glad I tried it anyway, in case it would have worked for me. Good luck!
I found this FB group extremely helpful. I haven't started LDN yet, was looking into LDN a year ago and had lots of questions with particulars to me. I'm cautiously optimistic and hoping for good results when I can start it.
The lowest dose people start with I usually start even lower than that. I think ramping up several find to do that much slower, and to see results might take much longer, than what I've seen written here. Off the top of my head I think to see results might take around 6 months or so and results may increase over time, please verify this elsewhere though, check out the ME FB groups info, perhaps PR too.
And the two steps forward, one step back is needed for some too, then at another point try the steps forward again til you find your sweet spot.
I know a few people who are on LDN, find it beneficial and recommend it. Sorry I don't remember their particulars to report more regarding their results and not able to seek it out at this time.
Good luck @Kalliope, hope it helps you!
I tried it last year, started with 0.5 mg. While it interfered a bit with my sleep, I initially felt like I tolerated it and was hoping it would have a positive effect. Unfortunately I developed severe depressive symptoms after a few weeks and had to quit. I read up on that reaction and apparently a certain percentage experience depression as a side effect and the recommendation then is to stop taking it immediately.
So that was a bit of a bummer, but glad I tried it anyway, in case it would have worked for me. Good luck!
@Anna H sorry you had that side effect and severe!
I read about LDN possibly causing that when researching LDN. That's one reason I didn't start it last year because some people I loved had died recently. I didn't think I could handle if any depression happened cause of LDN on top of mourning. I had read that for some the depression from LDN subsides and doesn't stay, it's good that you stopped especially since yours was severe.
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Kalliope
Senior Member (Voting Rights)
It's about 6-7 weeks since I started with LDN. Not any big effects so far. Perhaps deeper sleep and less "burning" sensation in brain after concentration.
But the short temper! I'm stomping my foot like a toddler over completely trivial things. I was wondering if it could have something to do with the LDN, so it was interesting to reread you having a similar reaction. Hopefully it's a temporary thing and thank gods I live alone.
DigitalDrifter
Senior Member (Voting Rights)
Tried it back in 2015, complete waste of money. I suspect it's a fad treatment with no proven benefit for ME patients.
Sly Saint
Senior Member (Voting Rights)
don't know if this is any good or not
Valarie from the United States shares her Chronic Fatigue Syndrome (CFS/ME) & Low Dose Naltrexone (LDN) Story
Valarie from the United States shares her Chronic Fatigue Syndrome (CFS/ME) & Low Dose Naltrexone (LDN) Story
https://ldnresearchtrust.org/valari...-syndrome-cfsme-low-dose-naltrexone-ldn-story
Kalliope
Senior Member (Voting Rights)
Sure you can. Are you thinking about trying it too?
Am still on 2.75 mg and think I will increase soon to 3 mg and see how that goes.
I was hoping it might help primarily with cognitive issues and there are some small signs of improvement. Am not able to delve into novels, but I have figured out how to knit a sweater and managed to follow instructions on how to assemble a small greenhouse.
ok, the greenhouse had to be taken apart and put together again because I'd made a mistake and I assembled the sleeves of the sweater the wrong way - thrice..
But nevertheless, this would probably not have been possible a few months ago. I've also been able to take much better care of my plants and it's been so rewarding to see them thriving after much neglect.However, the pandemic has slowed everything else down, so it might simply be the consequence of having less of other tasks to do.
So in short, no obvious or large improvements, but also no deterioration and not quite as heavy brain fog as usual. Sleep is deeper and I've become more ill-tempered, the latter is hopefully just a temporary adjustment.
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I am not sure yet. I have considered it, but I am very sensitive to drugs. Therefor I have been afraid to introduce new drugs. Not sure my GP support it with a prescription either. So as for now I am most curious about how others experience it.
That you have achieved some small things that you have not previously managed, sounds to me like a small improvement. We take what we get!
And it is probably still early in the medication. Maybe it's about finding the right dosage.
I do not know. I hope you experience more improvement over time.
And that the greenhouse blooms and that the sweater finally gets the sleeves the right way...
