Help to Sleep: Hi everyone, bad night... - Fibromyalgia Acti...

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Help to Sleep

Ferdy profile image
22 Replies

Hi everyone, bad night again, but I have been reading about a drug " Naltrexone " taken at first in low doses, has anyone tried or have any experience using this drug, I'm getting desperate for a nights sleep.

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Ferdy profile image
Ferdy
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22 Replies
BlueMermaid3 profile image
BlueMermaid3

Hello Ferdy

I was just wondering whether you are in America?

I personally have never heard of this medication before and was wondering whether you have done any research into it?

I am unable to find it on the NHS website which leads me to think that it is not a medication prescribed in the UK. However, I am not medically trained and I do not feel happy discussing it as I do not have the knowledge to back it up, but it does seem to have contraindications to medications many of us are taking.

If anyone knows anything different to this please feel free to say.

Wishing you wellness and peace

Lu xx

Ferdy profile image
Ferdy in reply to BlueMermaid3

Hi, No not in america south east Essex. the info on this drug come from LDN research Trust, you can contact them indresearchtrust.org once on there site just type in low-dose naltrexone. be interested on your thoughts after reading ldn fact sheets 2016.

take care Ferdy

BlueMermaid3 profile image
BlueMermaid3 in reply to Ferdy

Hi Ferdy

If you read meloha's reply you will see what I was trying to get at that it cannot be taken with opiates.

That's the only point that I was making.

Take care Lu xx

Redhots7 profile image
Redhots7 in reply to BlueMermaid3

That is what I read also. Seems like it is to help people get off opiates.

Ferdy profile image
Ferdy in reply to BlueMermaid3

Hi Lu, all this information I am receiving is very helpful, I am due to have an appointment at my local clinic soon and I will mention it there and see what the say, I am on Nortryptolene at the moment, and this helps with some things like restless legs, and does allow me to relax at night. I am going through a bad time at the moment , doctor trying me on different pain killers, many of them do not help, but I will keep looking and try to see what is best for me. I am grateful for all this help and info.

all the best. Ferdyxx

Sorebones profile image
Sorebones

Amitriptylene works for me! Out like a light 🐸

Ferdy profile image
Ferdy in reply to Sorebones

So pleased for you, we all need sleep.

meloha profile image
meloha

I take this and have for quite a few years. I am in the US and it seems it is more popular here than in the UK. There are web pages that can give you more info -- see lowdosenaltrexone.org, LDNinfo.org, ldnscience.com. There are also groups on Facebook and Yahoo discussing this. There have been several studies at Stanford University (in California) and it is effective for most people with FMS. However, you can't take it with opiates or drink alcohol, or at least those will be ineffective if you're taking LDN. LDN is low-dose naltrexone, because naltrexone is made in 50mg pills, and those using it for FMS usually only take 4.5 mg. at bedtime. LDN works through the body's opiate receptors and increases endorphins. The idea is to block the body's opiate receptors for a few hours at night, thus stimulating the body to make more endorphins. Most regular doctors know nothing about it and associate it with the old 50mg use, which was to help addicts get off opiates and/or alcohol. I get a prescription from my naturopath -- not sure if you have those in the UK? It either has to be compounded or you have to get the 50 mg pills and dilute it yourself. You can get the 50 mg pills from several places overseas, legally without a prescription. You'd need a prescription from an open-minded doctor for the compounded pills. Pharmacists at compounding pharmacies can usually tell you what doctors in your area prescribes LDN. As you can probably tell, you need to be a bit of an independent thinker for this. However, I have gotten a lot of benefit from LDN in reduced pain, better energy, etc. It works slowly and build up, so does not work to go from opiate pain meds to LDN and expect to get immediate pain relief.

Ferdy profile image
Ferdy in reply to meloha

thanks for this info.

meloha profile image
meloha in reply to Ferdy

You're welcome! I hate to see fibro folks miss out on something that has helped many feel better!

Ferdy profile image
Ferdy in reply to meloha

yes thanks once again.

Natura profile image
Natura

Meloha....jumping into conversation, you get this from your naturopath? Is this considered safe and natural? I have trouble sleeping as well, but do not wish to take medicine for it. I took a natrual melontonin one night, it made me very dizzy, and i still woke up in 4 hrs.

meloha profile image
meloha in reply to Natura

Well it is a prescription and a human-developed drug, so not "natural" at least by my definition of the term. To me, "natural" would be part of nature, such as herbs and things. As to safety, it is such a low dose that very few people have problems with it. A typical side-effect is that it might make you have colorful dreams, but I consider that a plus, LOL! Usually that's only for a little while when you start taking it. It can also tend to make you lose weight, so might be counter-indicated if you are overly thin. I did not have that problem, though have slowly lost weight while I've been on it. I'm still not thin but have gone down 2 or 3 clothing sizes. It stimulates a natural body process -- everyone has endorphins anyway -- but it is speculated that folks with fibro might not have enough, and more can make you feel better. Endorphins are a natural pain-killer that your body produces. It's what runners feel when they get a "runner's high". In the US, a naturopath is a medical doctor but they have a different kind of training -- more wholistic, with a broader base of treatments.

Hi my hubby has been taking this for years he had progressive ms you need a private script he then sends his to a pharmacy in Glasgow who posts it every month it costs 18 pounds a month . I can honestly say he disent have pain sleeps well an never takes cold / flu etc . But his mobility is very bad an is totally house bound . If you check out dicksons pharmacy Glasgow they might be able to help 🌸

Ferdy profile image
Ferdy in reply to

thanks a lot.

TheAuthor profile image
TheAuthor

Hi Ferdy

This drug is really an MS specialist medication for pain and mobility. It is known to have a huge amount of side effects and it is only recommended if you really need it. It is very difficult to get it in the UK without a private prescription as most GP's will not entertain it. I want to gneuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

Ferdy profile image
Ferdy in reply to TheAuthor

Thanks Ken, looking at a number of different things, so any information is helpful, I have definitely found that what works for one may not work for another.

Best wishes

Ferdy

meloha profile image
meloha

Where are you reading about the huge amount of side effects? From what I have read -- for at least 10 years now -- there are almost no side effects at 4.5 mg. Maybe you mean at 50 mg? As far as I know, when used for MS it is also low-dose, though I don't have MS so am not positive. In the US all uses except for addiction are "off-label" meaning that the FDA has not approved it for use in FMS or MS. The approval process is expensive and time-consuming, and no drug companies are willing to fund (or promote) it because it is already generic, so they can't make money on it. So only university-type researchers have done any research. Lots of politics and profit-motive are involved with drugs in the US, and probably in the UK too.

Naturegirl profile image
Naturegirl

Hi,

I have been taking low dose Naltrexone (LDN) (4.5mg) for the past two years and it has improved my quality of sleep enormously. I get it from a compounding pharmacy in South Africa - I live in Namibia. A Naturapath prescribed it for me. I have had fibro for 32 years grrrr:(. I back up everything Meloha has written about LDN. They are doing cancer research with LDN currently. It is particularly useful for ME, but can be used for many chronic diseases. I personally had no side effects, except for vivid dreams right at the beginning and I will never go off it. I also take low dose Lithium Orotate 10mg am and 10mg pm - google it :).

Ferdy profile image
Ferdy in reply to Naturegirl

thank you.

Ferdy profile image
Ferdy

I want to say thanks to all of you with the information regarding Naltrexone, will let you know the outcome of my visit to the local clinic when I have been.

All the best

Ferdy

Mad_scientist_ profile image
Mad_scientist_

I've just found a reference paper which says that in a small study of fibro patients

"observed a significantly greater reduction of baseline pain in those taking low-dose naltrexone than in those taking placebo (28.8% reduction versus 18.0% reduction; Low-dose naltrexone was also associated with improved general satisfaction with life and with improved mood but not improved fatigue or sleep. Thirty-two percent of participants met the criteria for response (defined as a significant reduction in pain plus a significant reduction in either fatigue or sleep problems) during low-dose naltrexone therapy, as contrasted with an 11% response rate during placebo therapy"

What I found surprising was the level of improvement and the number of patients reporting an improvement, whilst taking the placebo!

The full paper is here:

onlinelibrary.wiley.com/doi...

I've just looked in the BNF (British National Formulary) and Naltrexone is not listed at low doses, which must be a key reason as to why it's hard to get a prescription.

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