LDN my story

[Astonvilla68]

hello. This is just my own personal experience. I have taken over the years so many different drugs for fibromyalgia. None of them have worked and have just created more problems and side-effects. My neurologist recommended I tried LDN I have been on this now for just over five weeks so this is a little update has it helped? Most definitely, I have had a reduction in pain my fatigue as completely gone and Brian Faulk drastically reduced,. I am sleeping so much better and I’m still not up to the full dose yet so I have hoped to see more benefits still . on this medication I tyrated up very slowly as requested. I have had zero side-effects and starting to feel more like my old self i.e. pre-fibromyalgia. there is an LDN page on Facebook. If anyone wishes to read some of the comments. I tell this story in hope that maybe someone hasn’t heard of this and that it might help them too. Good luck.

[Onceabiker]

I hoped to start it last week but was told as I take CoCodamol I can’t have it as they both work on the same receptors in the body and the effect would be overdose.

[desquinn Partner Volunteer FMAUK Trustee in reply to Onceabiker]

I would go back and question the effect of taking them together being an overdose. LDN is an opioid antagonist and can be used in opioid addiction situations. There is advice within the LDN community about timing the doses of opioids and LDN to be at either ends of the day to try and get benefits of opioids.

[Iamthemedicalmystery]

Hi, I have never heard of this before your post, so thanks I'm going to do some research x

[Astonvilla68 in reply to Iamthemedicalmystery]

This is why I posted in hope it will help another 🤞🤞🤞

[Yassytina FMA UK Volunteer]

Glad too read things are improving for you 😀.

[Astonvilla68 in reply to Yassytina]

Thank you 🙏

[Woodystar]

I have been on LDN for over 12yrs now for fibro after trying everything the GP a prescribed and got no where.

LDN is not a cure all but it has made my life and pain so much more manageable and kept me moving, it’s just so wrong that I have to pay for it and it’s not prescribed on the NHS

[Astonvilla68 in reply to Woodystar]

I agree 100% so glad it’s helping you too. It’s a very cheap drug maybe that’s why we have to pay ( not enough profit for the pharma) and more profitable to prescribe the other rubbish that doesn’t work

[Cairz71]

Most doctors won't prescribe because it isn't licensed, thats why we have to pay for it

[desquinn Partner Volunteer FMAUK Trustee in reply to Cairz71]

The drug is licensed. However the formulation (dosage / method) is not offered and requires custom dispensing. The original pharmacy retrofitted a methadone dispensing rig to get the dosages correct for patients.

If memory serves the typical LDN dosage is in the 1-2mg starting off but typical alcohol / opioid dose would start at 25mg tablet whereas the ldn formulation was done with liquid.

It is not in the BNF for this use case and is therefore more "off label" than other fibro drugs hence the private consultation to get the prescription. But if the formulation was available then the prescription would then likely be free.

[Cairz71 in reply to desquinn]

What I meant was it is not licensed for the treatment of Fibromyalgia, not that it wasn’t a licensed drug, sorry ☺️

[desquinn Partner Volunteer FMAUK Trustee in reply to Cairz71]

No problem. Pretty much all drugs are not licensed for fibro