Low Dose Naltrexone (LDN)

[Onceabiker]

Hi, this is my first starter post although I have replied to a few questions from others.

After being run over by a car 40 years ago and suffering multiple skeletal fractures I have undergone 14 operations so far. Around 2019 I was further diagnosed with Fybromyagia. Multiple medicines later and serious consequences from that I was told I was hyper-sensitive and stayed away from opioids. I take Co-codamol, Nortriptyline and Sertraline and some Tumeric.

Over the weekend I had increasing abdominal pain and ended up in A&E for eight and a half hours alone. Finally I was diagnosed with a severe bladder infection.

Got home and as I walked through the door my wife just said “I’m off to bed” I had hoped for support and compassion. We haven’t slept in the same bedroom for two years. Any intimacy stoped between us at her decision when our last child was born 16 years ago. I have been to marriage guidance but she refused to attend.

Anyway, I had an anonymous phone call from another locum Doctor today which they think is a suitable replacement for a lack of appointments at the GP surgery. They refused to talk about LDN which I hear has been of help to some. As it is low dose I was hoping it would not effect me adversely. I believe it is around £30 a month but found a clinic in London that wanted to charge £70 per month on subscription!

Has anybody a) tried it and b) found a reasonable place of supply?

Thanks.

[Yassytina FMA UK Volunteer]

Hello and welcome, I hope there are members out there who can give you some helpful advice, sorry too read what happened too you with the accident 40 years ago , I know a lot of relationships stwy together when children are involved , my son who is 33 is in the same place right now, amazing father and his youngest is 11years, no intimacy with his wife and she is not very nice so that’s where he is at , it’s a shame she couldn’t give you some support after your time in A &E , have you any family or close friends you get too spend some quality time with ?we all need time for a chat don’t we.

[Onceabiker in reply to Yassytina]

Hi, unfortunately not, my brother is in NI and my Sister in Spain. The Labradoodle loves me though!

[Gizmok9]

I I’ve looked into this and wonder about trying it. I’m on tramadol so don’t know if need to stop that first… I’ve been told there’s a Dickson chemist in cambuslang, Glasgow that can prescribe privately for about £20 per month. Maybe a bit more for 1st consultation to get prescribed but I’ve been told they can post 👍 as I’m 2 hours from Glasgow.

[Sparklingsunshine in reply to Gizmok9]

You would need to stop taking any opiate based painkillers before starting on LDN. Basically LDN suppresses the body's natural endorphins, which work on the same pathways as opiates. Naltrexone at full strength is used to help people kick addiction to heroin and alcohol.

Sounds counter productive but when the body senses that these natural painkillers have been suppressed it makes more, even doubles the amount to compensate, so you get a big increase in feel good hormones. LDN is traditionally taken at night, so when you wake up the bounce back effect should be apparent and it lasts for several hours.

LDN is also believed to regulate the immune system which is why those with autoimmune conditions can find it helpful. It can help dampen down inflammation in the body.

Its not a miracle cure and it very much varies in how effective people find it. I think its certainly worth a try but keep your expectations realistic.

[Onceabiker in reply to Sparklingsunshine]

I do like my endorphins and ride a ebike a lot. Well I did, but the last 18 months have been difficult.. I needed the left socket of my hip replacing for the fourth time as it was travelling through my pelvis to the back. That was replaced in September but now I’m waiting for the meniscus in my right knee to be fixed and possibly a partial replacement.. These issues have stopped me riding and I need the endorphins.

I tried the Glasgow company today and booked a video chat. No one was there at the due time and I sent an email. Sorry we will phone you in two minutes. Half an hour later they phone me up and I’m talking with a girl who is suddenly cut off and another woman takes over. After a while she says Oh, you’ve phoned the wrong department. They phoned me!

Not a good start.

[Sparklingsunshine in reply to Onceabiker]

I've always found Roseway extremely efficient myself. The prescriber only works on Wednesday afternoons there so you need to prebook. They will send you out a medical questionnaire which needs to be completed before your consultation

I havent experienced any other LDN companies but am very satisfied with Roseway.

[Gizmok9 in reply to Sparklingsunshine]

I Kind of thought that, I was planning to speak to gp. I’m finding hyperbaric oxygen treatment a help at the moment so leaving for now.

[desquinn Partner Volunteer FMAUK Trustee]

Hazel_Angelstar Can you reply with some current information. Thanks.

[Sparklingsunshine]

I use Roseway Labs in London for LDN. I started on the liquid very low and very gradually built up. I now take capsules, 4.5ml at night. When I started it was £30 for the consultation and prescription and then you pay for the cost of the medication. The prescriber is an NHS GP.

Usually you need a new prescription every 3 months, but once stable on dose the prescriber leaves you enough repeat prescriptions for the year so you only need a follow up yearly. I get 100 capsules for £75. I found the capsules worked out cheaper than the liquid, especially when you get on the higher doses.

The other source is Dickson chemist in Glasgow, they are recommended by the LDN Trust, check out their website for more info. I've found it very helpful. I cant take the normal fibro meds so this was a good alternative for me.

[Onceabiker in reply to Sparklingsunshine]

Thank you for that. You get relief from it?

[Sparklingsunshine in reply to Onceabiker]

Yes I've found it helpful for mood, fatigue and pain.

[Onceabiker in reply to Sparklingsunshine]

Thanks

[Sparklingsunshine in reply to Onceabiker]

I tried to get it via my GP but he wouldnt prescribe it. They are happy to prescribe strong painkillers , anti epileptics and antidepressants, at great cost to the NHS, but not something cheap and effective, at least for me. Go figure.

[Judithdalston]

I used Dickinson to get liquid LDN,and Roseway Labs for another private prescription more recently…both very good. But LDN didn’t obviously work for me…best relief I get is from regular gentle spinal manipulation ( McTimoney trained chiropractor) and swimming, and I keep all my vitamins and minerals levels up with quality supplements and private testing ( vit D,folate, B12 and ferritin)

[Hazel_Angelstar Administrator FMA UK Staff]

I used ldn previously (started taking adverse reactions when menopausal)

I got my private prescription from my gp, and only had to pay Dicksons for the actual medication each month

However, if your gp is unwilling to prescribe - then you can go through Dicksons chemist. Not sure what current prices are but I paid approx £20/month for liquid.

Ldn can help but does not work for everyone

[LunaVi]

I get my LDN online from Dickson's chemist in Glasgow this is their price list:

The cost for the liquid LDN 1mg/1ml is from £22.50 for a 28 day supply

The cost for 1.5mg, 3mg capsules / 4.5mg capsules is £31.50 for a 28 day supply

The cost for Sublingual Drops is from £28.00 for a 28 day supply

The cost of postage is from £9.50 (international).

The initial rapid consultation cost for new patients is £50.00 Every 3 months you will require a new prescription which is £30.00 per prescription.