Low-dose Naltrexone articles and experiences

In the UK you have to get LDN from a pharmacy in Scotland. Ideally your GP writes a prescription and then you get it from them. I think it costs about £30 a month.
If your GP won't prescribe it then I think they can arrange a call with another dr who will , which you pay for. Not entirely sure on this but I know someone who had to get it this way despite her consultant saying she should have it her Gp wouldnt prescribe.

 

Thank you @Sbag. I think I’m sorted. Thanks for the helpful info.

ETA: will be discussing with doctor to check advisability in my case.

 

That’s good @Binkie4 I wouldn’t be able to help as I get mine on prescription in Norway and have no idea how it works in the UK.

In my case I’m pretty sure it’s the anti-inflammatory effect that is helping me. At least, something about LDN is definitely helping. If I forget one dose I will quickly be reminded, as the nerve pain will be back about an hour after, when the effect of the last dose runs out. I always feel the pain come back before I remember that I forgot to take it. Hard to believe that is placebo, but I’m open to the possibility. If it works...

I got significantly worse for the first 10 days, then suddenly it flipped and started helping instead. I don’t think my energy levels have improved much, just that the absence of chronic nerve pain/aches makes it so much easier to function.

I have heard just as many people tell me it didn’t do anything for them, or they felt worse while on it, as people who are helped by it. Have not heard anyone say they got worse long term, but then like with everything else people are usually quicker to tell success stories than failures.

My GP was pretty clear that if it doesn’t work within one month I should quit.

I completely agree I would like to see some proper studies on a ME/CFS cohort. My impression is that it’s a low risk drug at such tiny doses, but we don’t actually know that. And, of course, PwME often react differently to drugs than other groups. Studies definitely needed.

 

Many thanks @andypants.

 

I think LDN is incredibly overhyped. I'm not denying that it helps some people. At the very least I would advise anyone not to visit any FB groups, because most of them are cult like. If LDN didn't help, you're doing it wrong. Almost like the BPS crowd.

I had a very negative experience with LDN, at first it made me feel better, but then a few days later I had the worst orthostatic intolerance EVER. I couldn't stand for more than a mimute due to extreme head pressure. Fortunately, it went away after a few weeks.

 

I agree it's hyped and some FB groups are better left alone. However for those of us lucky enough to get an effect it is a sort of wonder drug. It takes away so much of the pain and discomfort I live with every day.

I'm sorry it didn't work for you, Pechius Interesting that we seem to have had the exact opposite response to it. You first better then worse, and me first worse then better.

Edited to finish post that I posted too soon because... ME.

 

I started candesartan for hypertension a few months ago. I had 4 migraines a week. Since starting candesartan, I've had one migraine. It is used off label for migraine but I did some research. Candesartan also works on TLR4 as does LDN. It hasn't improved other symptoms. Angiotensin receptor blockers are being studied for reducing neuroinflammation.

 

Transdermal LDN helps my sleep. My doctor likes LDN for neuroinflammation.

 

Same in the US & the price depended on where it was being shipped. I was unable to afford the LDN.

 

How to get a private prescription for LDN, and have it posted to your address from Dickson Chemist in Glasgow.

https://docs.google.com/forms/d/e/1FAIpQLSd1hfdevDYzoqJbKG4y5q33F2ynfFBrixJB9pb91XHTedw_sg/viewform

 

Hello. I have read that LDN is available for about $36 for 30 pills from a compounding pharmacy in Aurora, Illinois (USA). The pharmacy is called The Compounder. I just went to their website, and they claim an A-plus rating with the Better Business Bureau. https://thecompounder.com/

 

Merged thread

LDN seems to be working

I started LDN about 5-6 weeks ago. I started slow, had to go down because of constant headaches and now I’m at 1.5 mg every morning. My plan is to go up to about 3.5 to 4.5 mg or whatever works.

When I reached about 1.0 mg I started being more exhausted and all my other symtpoms remained. Then about 4 days ago, 1 week after starting 1.5 mg, I stopped being dizzy and feeling so crappy and dead when I woke up in the morning. I can’t say I feel refreshed but I don’t feel as bad. My brain fog is also almost gone and even if I overdo it, cognitive problems won’t be nearly as bad. I can do more brain work too.

Before I used to nap about 3-4 times a week in the afternoon. Now since LDN, I have to sleep every afternoon. I wonder if I feel better because I sleep more in the afternoon ? I haven’t been sleeping more during the night, sometimes even less the past few days because I had early appointments.

We’ll see how it goes, it’s still early. I’ve had good weeks before and it didn’t last. I’m still happy about it, no matter what happens. It’s good to feel almost normal for a change...

 

glad you've had a good few weeks. I'd agree that you need to give this much longer, given the cycle of worse and better weeks/days that so many of us have. let us know how you get on!

 

Excellent, I hope your improvements continue.

Fwiw, I tapered off LDN last fall because I wasn't sure if it was doing any thing.

It was. My sleep worsened, and waking up nauseous was more intense.

So I eased back onto LDN (4.5ml) , sleeping better (still not great) and less waking intense nausea (but still nauseous).

I note you said '1.0 mg'. Are you dissolving the capsules in water and measuring your dose that way?

 

Glad to hear its working!

How did you get it?
My new GP agreed to prescribe it but the provincial drug coverage will only pay for it if i were addicted to alcohol. Otherwise its $300 a bottle
I was thinking i could become an alcoholic so then it would be covered

 

Alcohol is quite expensive, and rarely covered by insurance.

 

That is the big problem with my plan
Perhaps i can replace my food calories with alcohol calories. Nutrients are an issue but that would only backstop my need for the Naltrexone.

 

Yes, I am dissolving 1x50 mg tablet in 50 ml of demineralized water (couldn’t find distilled) and thus getting 1,0mg / ml.

I’ve heard other people say they quit because it wasn’t doing anything but then realized it was working when stopping. Glad it’s working for you too !

 

It took me 3 years to get it. I finally found an infectious disease specialist who agreed to prescribe it to me. Don’t give up. The best thing is it’s covered by medicare here and costing a big... 6$/month !

 

My new doctor gave me the prescription and i thought i was home free but the provincial drug coverage won't pay the $300/bottle cost