Low-dose Naltrexone articles and experiences

@Dechi - yes, my doctor wanted me at 4.5 when I saw him in early May because he said that’s where the best results lie ( close to 5 so our doctors agree) which is when I made the increase. I do want to try and sort something out but have felt so unwell since I restarted only one dose. Maybe I need to start again at 0.5 but I’ll wait till I get sublingual drops or the cream.
What happens to your sleep is odd.......Good luck!

 

Merged thread

Article by Miriam Tucker - Low-Dose Naltrexone: An Inexpensive Medicine for Many Ills?

https://www.medscape.com/viewarticle/926611

(to read article I think you must register with Medscape)

 

This is good news. Or is it?

We hear a lot of LDN and ME/CFS through articles and case reports. How promising the meds is, and about it's benefits.
But we need a big clinical trial on LDN! To proof it. If not, these articles gives no new info. As any other articles about probable meds who can be good for ME/CFS patients. For example, no way my doctor will subscribe LDN to me as things are now, no matter what these articles conveys. I wouldn't try it either, because the facts are largely missing.

That said, I have heard a couple other patients have tried it, with success. Maybe this is something! I do not have access to Medscape, so I couldn't read the whole thing. And maybe I have missed something (I'm not an expert on LDN-studies). But do you know if there will be clinical trials on LDN and ME/CFS? I really hope so!

 

https://www.s4me.info/threads/low-d...me-bolton-chapman-van-marwijk-jan-2020.13137/
https://www.s4me.info/threads/low-d...atigue-syndrome-me-cfs-2019-polo-et-al.12426/
https://www.s4me.info/threads/naltr...rom-me-cfs-patients-cabanas-et-al-2019.11797/

 

Merged thread

Low-Dose Naltrexone (LDN) - What's your experience? any advice?

I've been sitting on the fence regarding LDN for a long time, but the brain fog is getting (even) worse and even a small improvement would have meant a lot for a higher quality of life. I brought Miriam Tucker's Medscape article Low-Dose Naltrexone: An Inexpensive Medicine for Many Ills? to my GP to discuss and he was open to give it a try.

We were a bit uncertain of the dosage, but I assume a good starting point will be 0.5 mg in the evening and a slow increase. MEpedia has a section about LDN, but some of the links regarding dosage were dead.

I also have a bit low metabolism and take Levaxin. Anyone else with low metabolism who have tried LDN?

Bateman's ME/CFS Clinical Coalition decided last year that their number one priority was a clinical trial of LDN. Any news on any progression there?

I'd love to hear your input and experience about this drug. Any advice or useful resources you know of? Other thoughts you'd like to share on the topic?
It would be much appreciated

 

Here is a resource on diluting your own if you cannot tolerate starting at 0.5mg. It is also more cost effective this way and you can increment in small steps. Need to keep in fridge and replenish solution within a certain number of days
https://altarp.com/how-to-prepare-low-dose-naltrexone-ldn/

 

@Kalliope Have you looked at this website - it has a lot of info
http://www.lowdosenaltrexone.org/

 

I hope 0.5mg in the beginning will go well, but great to have a backup plan. Thank you!

I had not. Looks very useful. Thanks!

 

You might find this FB group helpful: https://www.facebook.com/groups/200010163370187

My personal experience was that it had little effect, apart from maybe affecting my dreams. I was not on it long enough though, so may give it another try. My feeling is there is a lot of very persuasive literature on the internet now regarding LDN, but if you did a bit deeper you'll find that the positive experiences are probably a minority.

 

Thanks, @InitialConditions I'll have a closer look at that facebook group

May I ask for how long you were on it? And if you decide to try again, for how long you think is sufficient before concluding whether it's helpful for you or not?

Interesting that your impression is that positive experiences are a minority. There was a big LDN wave a few years ago in Norway following a documentary on it, but seems to be talked much less about now. Don't know what to make of that..
Would be nice to have some proper clinical studies!

 

I asked a friend of mine who is a pharmacist to create me some 2,5 mg LDN. I used it over 2 months without any effect.

 

How convenient with a pharmacist friend.
I'm sorry it wasn't helpful for you, though.

 

Yea, i tried so many things since im ill and the only things that ever helped me was benzodiazepine/lorazepam and Phenytoin. Both cant be used for long sadly.

 

Dreadful experience. Started on 0.1mg, then 0.2mg. Only managed 10 days as it made me very irritable and aggressive (I'm very patient normally),t unable to sleep more than 1 hour at night.

 

I tried LDN a few years ago. I was at the lower end of severely ill at the time. Started with 0.25mg. I didn't notice any improvements at all.

What happened though, was that I got more and more tired/sleepy and slept more and more... and more... like 20 hours or more at a time. Awake for a few hours and then slept another 20 or so... Awake for a few hours and then slept another 20 or so...It kept getting worse..

I was desperately hoping for it to help, so I listened to those who said that "you just have to give it time, the good effects will come eventually". After a while I tried lowering the dose even more (half of what I started with), but it didn't help.

I can't remember exactly for how long I tried before giving up, 3-4 months maybe?

 

I am sorry to hear that @Badpack
So wish there will arrive better options for us soon!

That sounds horrible. And you started so carefully, too. Thank you for sharing that @obeat It's definitely not for everyone, I understand. Hope you soon went back to your normal again when you stopped.

Thanks @mango for sharing your experience with the drug. Sorry to hear it was not a good one though. Must be hard to know what to do when you're already very ill, becoming so sleepy and tired on top of that, and then being asked to be patient.

 

@Kalliope I had similar experiences with SSRIs ,if that's any help.

 

others here have tried LDN
https://www.s4me.info/threads/new-gp-next-month-and-naltrexone.5098/

 

My feeling with most interventions is that you need to give it at least a month, and probably two months. The problem with LDN is that you'll be told if you have no improvements that the dose is too high, or possibly that the dose is too low! As you are probably aware, the idea is to work up from ~1 mg (or less) to 4.5 mg. You'll also hear people saying you need to give it much longer.

I took it for a month or so. I have quite severe tinnitus and this is something I am really wary of when trying new medications. I went through a worsening patch with my tinnitus but looking back I cannot reliably attribute it to the LDN.

 

Interesting! Glad it's been useful to you!

Thanks. I looked at old threads on the topic before starting this, but think I missed that one. Will have a read

Yes, giving it at least a month sounds like a good idea. I've seen some recommending 6 months, but I don't know if I'm willing to try for that long if there's a worsening of symptoms.
I'm sorry to hear you have severe tinnitus. That sounds awful and I understand why a worsening of it while trying out a new drug would make you stop. I hope the same won't happen again if you decide to have another go.