Low Dose Naltrexone

[Neil46]

Hi everyone. I am new to this Community and I don't suffer from Fibro. I suffer from RLS (Restless Leg Syndrome) and am a member of that Community in HealthUnlocked. Many of my fellow sufferers also have Fibromyalgia so I want to share with you what I have discovered by reading "The LDN Book". This is not an advert and I have no financial interest in the book or the recommended meds. I just want to urge you to research LDN (Low Dose Naltrexone) online and by videos on YouTube and Vimeo. I hope that many of you will discuss LDN with your doctor and find relief from your pain. Best Wishes

[spider555]

I've tried it but apparently it helps some people.

[Neil46 in reply to spider555]

Sorry if it didn't help you. We are all different. I hope research speeds up and docs take it on board, funding too!

[desquinn Partner Volunteer FMAUK Trustee in reply to Neil46]

unfortunately Jared younger that did the two pilot studies with fibro has moved from stanford and is focussing on other treatment options for fibro.

[Janicej in reply to spider555]

Try PRAMIPEXOLE but on Prescription only good luck.

[desquinn Partner Volunteer FMAUK Trustee]

there are quite a few posts over the last couple of years on this.

Clinical research has two pilot studies when I last looked with some positive results.

anecdotal comments suggest that some people do benefit from using it but its not for everyone.

well tolerated by people

However, not licensed for fibro and not in an easily accessible format and difficult to access via the NHS and will probably require a private prescription and some hoops to jump through with your GP.

[spider555 in reply to desquinn]

My GP wasn't interested.

Had to go private.

[desquinn Partner Volunteer FMAUK Trustee in reply to spider555]

yes that's my understanding.

[Neil46 in reply to desquinn]

LDN is cheap to produce and there is little financial profit so the take-up is slow. It has been around for many years with many successes, but money rules nowadays

[desquinn Partner Volunteer FMAUK Trustee in reply to Neil46]

I do not think it is cost that is the issue. the formulation is geared towards A&E use for overdose situations. It needs to be licensed to be produced in a different form that the NHS then prescribes.

being licensed for other conditions and / or clinical research that allows doctors to be comfortable with prescribing it in these situations is what is needed.

[Neil46 in reply to desquinn]

Yes, FM is a tricky one and we all respond differently. Let's hope for progress. I wanted to spread the word that it is out there but funding seems difficult in many places it seems

[desquinn Partner Volunteer FMAUK Trustee in reply to Neil46]

again its not funding but doctors being comfortable to prescribe it for fibro based on evidence. When they look it up (as an NHS dr) they see it as an opioid antagonist and not for fibro. the formulation in liquid makes it even more difficult. hence the pharmacy in glasgow approach.

[Neil46 in reply to desquinn]

Yes I agree desquinn, the doctor must feel he/she can prescribe it eg gabapentin is being prescribed for pain management when it is FDA approved for seizure disorders (p156 the ldn book). LDN is FDA approved as a treatment and deterrent for drug or alcohol addiction. The use of Naltrexone in a low dose is called off-label use. It is common for practitioners to use meds for purposes other than those that they are initially approved for, so there is a path for prescribing. (Sorry, clumsy description) but we should ll benefit from this potentially life-saving med in my opinion. And it is cheap.

[desquinn Partner Volunteer FMAUK Trustee in reply to Neil46]

gabapentin in licensed for neuropathic pain within the UK

bnf.nice.org.uk/drug/gabape...

naltrexone does not have a license that relates to fibro or pain so drs have difficulty under the NHS guidelines is prescribing it.

bnf.nice.org.uk/drug/naltre...

For a practiitioner to prescrbe off label (license) they have two problems in LDN.

1. not enough clinical evidence in treating fibro or pain

2. no prescription format that is at the correct level to give to patients at the low dose required. Pharmacy had to repurpose a methadone rig to get levels right to give to patients on a private prescription. If there was a 1mg formation then more GPs may be give it a chance on the pilot studies or other conditions evidence but too many barriers at present.

more trials needed to break these barriers down.

[Neil46 in reply to desquinn]

Thank you for the extra insight desquinn. Can it be worth it financially for a compounding pharmacy to release a 1mg formation under a brand name? Legally? Acceptable to NHS? I am way out of my depth now but I agree doctors may be more open to prescribe, which would build a case. In the meantime many people are suffering and NHS funds are going to Big Pharma needlessly and maybe hurtfully. Soapbox over...

[desquinn Partner Volunteer FMAUK Trustee in reply to Neil46]

i think the formations (but not a 100%) are part of the guidelines so a pharmacy cannot make a pill. One of the pharma would need to create a formulation but that would need to be tested to some degree and be licensed.

[Neil46 in reply to desquinn]

Thank you so much for the time you have taken to "bring me down to earth". There is less point in having a possibly helpful med if it is difficult to obtain. I must research more carefully if I am to recommend that others do too.

Best Regards

Neil

[Hazel_Angelstar Administrator FMA UK Staff]

I've been taking ldn for about 5 years now and it made a huge difference for me (I describe it as it turned down the intensity of the pain dial a few notches)

Happy to chat via pm if you have any questions x

[desquinn Partner Volunteer FMAUK Trustee in reply to Hazel_Angelstar]

Hazel_Angelstar fill in an of the blanks or bits I have forgotten if you can

[Janicej]

Hi there I myself are new to this grill sight extremely helpful in discovering more re different health issues, I hadn't been on site for a few days but, today I noticed yr post and wanted to reply because I myself do not have Fibro but, I read about yr problems with Restless Legs this is a real problem for myself I think it would be hard for anyone to understand how bad this can be if You suffer with it the reason I have responded I am on prescription ( PRAMIPEXOLE) after years of suffering thinking there wasn't no help but. I am in treatment for many other health problems and mentioned to my Docter hence PRAMIPEXOLE) I hope that might be of help to other fellow sufferers of this truly awful condition. I had a 5 day/night of not sleeping pacing the floor hour after hour I was feeling Suicidal and I do not say that lightly!! I have R A, Osteoporosis spine/hip, severe hypertension, high Cholesterol, Asthma and take many medications each day so I also have extreme exhaustion which I mention only to explain just how bad this condition can be, Apologize for length of text but, I wanted to put in Context to other health issues.

[Neil46 in reply to Janicej]

Hi Janicej, thank you for your reply. I know exactly how you feel with the sleepless nights and mood swings. I was on pramipexol followed by ropinerole (etc etc) and after a time back to pramipexol. My problem was augmentation (described on the Restless Legs Community and maybe others) so I had to go through a withdrawal period - not pleasant! to stop and move to pregabalin. I don't know if you are a member of the Restless Legs Community but you will find advice and information better than I can give on that site. Please tell them what dose of prami you are taking and for how long, along with the info you have given here and you will see replies from many others in the same boat I am sure. I will respond too.

Kind Regards

Neil