Has anyone any experience of LDN for fibro?

[Devonlady]

[Hidden]

If your on Facebook it may be worth your while going onto a page called beating thyroid disease with LDN, the lady that runs it will direct you onto a fibro LDN group, she's more in the know than me. There's also a private doctor who will happily talk to you for free about it, the only charge is if you decide to have him support you whilst your taking it, private message me if you want any details...also have a look on utube there are some talks about fibro and LDN by the LDN research trust s x

[Devonlady in reply to Hidden]

Thanks I have researched this quite a bit as seems to be making a good impact on fibro sufferers. I do have another GP who will definately give me private perscription if necessary however my GP says she just has to check a few things then sould be ok to give me script. Thanks for your help x

[Hidden]

m.youtube.com/watch?v=zZqtP...(Not working as expected?)

[ladymoth]

Hi Devonlady,

I have done a bit of research about Low Dose Naltrexone, and would advise caution.

is not an approved drug in the UK, except for patients with opiate dependency. Basically, it helps people to safely withdraw from narcotic drugs.

Several studies have been done to see if it helps with the pain of fibromyalgia, but the results were not convincing and thought to be due to the placebo effect.

There is no reason why it should help, as it blocks the receptors which enable pain-killers to work, so you would actually expect to feel more pain!

More alarming is the fact that one of the side effects is muscle damage which can poison your kidneys. This can be fatal.

I am pretty sure that your GP won't prescribe it, but please don't try getting it online. Patients receiving this treatment for withdrawal need very careful supervision, and they only take it for a short period, whereas with fibro we know that whatever we take it's going to be for a long time!

I know that we all get desperate for help with our pain, but I do hope that you won't take risks with your health from taking this potentially very dangerous medicine without proper supervision!

Take care

Love Moffy x

[Hidden in reply to ladymoth]

hELLO, DO YOU HAVE ANY LINKS TO WHERE YOU DISCOVERED THE INFORMATION ON MUSCLE WASTAGE AND KIDNEY PROBLEMS, oh sorry about the capitals. s

[Ozzygirl64]

As far as I know this is used for cancer sufferers and MS sufferers. If my GP would not prescribe it then no way would I try getting it elsewhere xxxxx

[ladymoth]

Too right, Ozzy!

[Devonlady]

Thanks all I do have afew MS friends who have this and they say it really has a great effect on pain so will see what the GP has to say once she has looked into it for me. Will keep you informed. x

[Hidden]

It can put you at risk liver problems at doses of 300mg for drug addiction it's used at much higher doses. Low dose naltrexone is used at a max of 4.5mg and is apparently not toxic, infact I have read aspirin is more toxic.

[Hidden]

LDN puts a short block on the opioid receptor causing up to a 300% rise in endorphins which the immune it has other benefits. It's not a magic drug but seriously worth looking into

[Tutsy]

I had been on the Naltrexone (4.5mgs) for about a year and it helped greatly with my energy levels. I cant say if it helped with the pain but I was able to get a lot done that I wasn't able before. My own doctor wouldn't prescribe it but a friend put me in contact with one that prescribed it for her, she was suffering from pmt. I live in Ireland and there isn't much understanding of FM here as far as I can see.

[Devonlady]

Thanks everyone. The fatigue I can conquer I find if I can sleep. it for me is the pain I have to get sorted so i can get sleep and then pace myself and have a life. I have done fairly extensive research on LDN and have lots of friends who are MS sufferers on this and they find it really helpful as it is very low dose nothing like for drug users and infact it is less hard on the liver etc than the previous meds I have been prescribed by the GP.

I have a reputable doctor in Scotland that can consult over the phone and make sure nothing in your medical history prohibits the use of it so all safely and legaly done. I only asked the question as wanted to hear if anyone with Fibro had actually tried it and what if anything it did for them x

[john25]

What is the route of administration of the naltraxelone? Is it a tablet swallowed, injection, tablet dissolved under tongue?

The reason I ask is the effects of this medicine differ majorly depending on it's ROA.

For example, when taken IV it will reverse and block the effects of opiate pain killers and thus can save a person from an accidental overdose of their opiate based pain medicine. However, when swallow in a tablet, it will releive the constipation caused by opiate medicines without effecting their efficacy at killing pain. This effect is used in the relatively new medication being sold in part of Europe and Australasia as Targin.

[Devonlady]

I can be taken in liquid form or tablet and is usually started off in 1mg dose

[Bethy1962]

Hi, came across your blog.

Ive just started to use LDN, desperation led me to it.

For me its been fantastic, Im overjoyed with the results.

Still have pain (spinal condition) but fog/fatigue lifted....still have low days but nothing like they used to be. Each day improving.

In short I had come to the end of my tether, close to walking out on my family, I wanted to be alone as Fibro had taken over my life and I had nothing left to give and no energy to receive...LDN has given me a new lease of life, I have hope...a month ago I could not have said that.

Research research research, make a decision based on fact, plenty of articles out there relating to LDN.

My step daughter is a Doctor of Bio Chemistry, I researched and asked her to do the same.

Politics relating to pharmaceutical companies complex.

Money/funding short.

Fibromyalgia a complex and misunderstood syndrome, still lacking recognition etc

I weighed up all these issues and made my decision, it may not suit you or others, for me its perfect, so far

Gentle hugs and love,

Bxxx

[Devonlady in reply to Bethy1962]

Bethy, Thanks that is very helpful. I have had a really bad trot with the fibro recently and I think I am going to try this. My GP says that at the doses suggested for fibro it will not have any detrimental effect on me and could help. She is not allowed to prescribe it but has checked the credentials for the doctor who will do so if I wish. A friend has offered me a trial of theirs which I am about to do.

The meds I have been on int the past all seem to loos effect and you take more and more so I have sufferesso many side effects that I now am on nothing except co codamol and hrt. I think times are so that I need to try this for myself and see.

Thanks xx

[Bethy1962 in reply to Devonlady]

Hi, Just picked up your reply.

Hope all goes well with LDN.

Could you post your results, very interested in other folks experience of LDN in relation to Fibromyalgia, side effects, positives, negatives etc.

Good luck.

Gentle hugs and love,

Bxxx

[shar0805]

THANKS....just joined and I'm in the process of getting LDN, my consultant recommended it, it's from a chemist in Scotland and I'm waiting for the Doc to ring me to get a 'script sorted. My short-term memory is shot, I find this part of fibro hardest to combat, I struggle holding a decent conversation at times. I've had a lidocaine infusion about 4 weeks ago and this has helped massively, I just want to be normal regarding my memory. I've also started 5-thp, magnesium and peppermint (all separate tablets) on my consultants recommendation. The pain I just about manage with gabapentin, hot baths and alcohol but I need my memory back, I wish I could find the place where I left it....... No opiates he has said....

Does this sound right to you?