Low Dose Naltrexone for fibromyalgia? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Low Dose Naltrexone for fibromyalgia?

16 Replies

Since the last post on this four years ago, has anyone had success with Low-Dose Naltrexone (LDN) for fibromyalgia?

Here in the USA, Stanford University did a study concluding it offers "significant reduction in symptoms" for both Multiple Sclerosis and fibromyalgia patients. It's the same drug as Narcon, used in emergencies to treat patients that have overdosed on opiate drugs. But in very low doses of 3-5 mg, it is said to help reduce fibromyalgia symptoms.

It must be prepared by a special compounding pharmacy to get the low dose in pill form and is said to be very inexpensive in the US. In fact, that's why no pharmaceutical companies are pursuing it. It's too cheap. You cannot be on prednisone while taking this medication. And it may counteract the affect of alcohol and opiate drugs, as it's also used to treat these addictions.

My physician will prescribe it to me for "off label" use in January when I'm finally off prednisone. After two years of suffering, my diagnosis of fibromyalgia was finally confirmed last month after a third opinion at our university medical center.

Has anyone else tried this yet? Any side effects? Does it help?

Thank you!

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16 Replies

My GP refused to give it to me here in the UK, and I was told it had to be made up to tailor people and that it was very expensive x

in reply to

So sorry to hear that. Should I try it, I'll keep everyone posted on the results. Thanks very much for replying. Best wishes my friend. 😊

St_Bridie profile image
St_Bridie in reply to

Have heard that there are some Dr's who prescribe, but have to pay, not on nhs, although I'm going to try.....

Trikki profile image
Trikki

Morning.....I have never heard of it, but I would love to know if it really helps, I shall look forward to hearing from you in January....x

Telynores profile image
Telynores

My Dr is looking into it at the moment. Doubt we have a pharmacy who will be able to fill the prescription though as I'm in a very rural - and backward - area :-P

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

I've been on ldn for about 4 years now. My gp (I'm in uk) writes me a private prescription which I send to Dickson's chemist in glasgow. It's not expensive ... £18.50 for liquid /£33.00 for capsules per month. If your gp will not write you a private script, Dickson's chemist can put you in touch with a private doctor (£35 phone consultation, then £15 every 3 months for prescription if I remember correctly).

Ldn for me has been life changing. Didn't take my pain away but reduced it to a level where I can function.

Ldn Research trust is a good place to look for information.

in reply to Hazel_Angelstar

Thank you for your reply. I'm delighted to hear that you've benefited from the Ldn treatment. This is very encouraging for us all.

I will keep you all posted on my response.

My best to everyone dealing with fibromyalgia and all that goes with it.

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to

Good luck. My daughter also takes it, but while it does help her it does not have such a big difference on her xxx

St_Bridie profile image
St_Bridie

Have heard it helps alot. Going to ask my consultant if I can go on it as I have no pain relief at the moment.

in reply to St_Bridie

Also ask about gabapentin if you haven't tried it. It has helped me some with pain and sleep. It's rather inexpensive and far more accessible.

St_Bridie profile image
St_Bridie in reply to

Already tried tramadol, amatriptaline, gabapentin, pregabalin, neproxen, by trans patches, morphine tablets, nortriptaline, lyrica, cybalta....

in reply to St_Bridie

I can relate. I too have been on several of these. May God bless you and keep you comfortable to the extent possible.

TheAuthor profile image
TheAuthor

I have read a great deal about LDN as my wife suffers with Primary Progressive MS. We have talked to her specialist about it. We are hoping that she will be trying it shortly. I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

in reply to TheAuthor

Thank you Ken. All the same to you and your wife. I hope it works!

TheAuthor profile image
TheAuthor in reply to

Thank you my friend :)

I've read a far bit about it but have given up because of my GP...but good luck to you who get to try it and more so are successful with it x

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