Anyone in UK using LDN ( Naltrexone ) ?

SBee

Senior member
Joined
Feb 13, 2024
Messages
373
Reason
DX FIBRO
Diagnosis
12/2023
Country
UK
Hi

Although I am not currently on meds for the fibromyalgia, I think I may be needing to trial something soon. Am seeing a rheumatologist tomorrow, to investigate seronegative rheumatoid arthritis, and if that is diagnosed I want to get that pain under control first.

Today, on a UK menopause forum, I in a mixed thread from women who also have fibro, and/or RA. Someone in the US kindly dropped in to say how much LDN has benefited her ( Naltrexone)

I know we all react very differently to meds, and have been researching on here, and a LDN research site, but am interested if anyone in the UK is currently using this ?

Because it seems it is only offered off license in the UK.( some g.ps will maybe persuaded to prescribe )

Anyone had experience of getting LDN in the UK??
 
I haven’t tried it yet Sarah but I am looking into it. My problem will be whether or not it interacts with/effects my RA drugs - especially the biologics as LND modulates the immune system whereas biologics suppress it.

A pharmacist at the LDN research centre told me that:

“LDN has been used for fibromyalgia for many years where most patients have seen significant decline In symptoms, increased energy and better quality of life”.

I watched a couple of talks from a Fibromyalgia conference in Ireland the other day. I think it was held in 2022 and one of the speakers there said she was now “doing well” on LDN. You can probably find it on YouTube.

The medical marjuana route also interests me so that is something I’m exploring too at present. I don’t think my G.P. is likely to be onboard with either of these two treatments though.
 
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Yeah @Sueb24 interactions are something I look at closely too. Like a lot of us I have multiple conditions and therefore multiple medications that all have to be compatible with each other. I received an online letter from a rheumy nurse and it HUGE red letters it stated two additional drugs I am prescribed should be avoided with the RA medications!

But we are the ones living with the debilitating and painful symptoms and it seems often it's up to us, as individuals to find the best solutions to help with a better quality of life.

I have been on probably the same London clinic website as you mention. I will look at youtube,thanks for that.

I can no longer tolerate marijuana after my first bout of chronic fatigue syndrome I found I couldn't tolerate stimulants as a happy smoke, caffeine or alcohol. Whilst I don't miss them as such I do wonder if a cannabis based alternative may be accepted by my body. Let us know how you get on it you do to on that route?

As far as I'm concerned if something has no negative impact on my prescribed medications or may deteriorate conditions further, then my gp wouldn't need to know. 😁
 
@Sueb24
Morning Sue

Can I ask you if you have a good steady support from with gp or rheumatologist dept when having both fibromyalgia and rheumatoid arthritis?
Or who will deal with what condition? I ask as I feel completely ' dumped ' in regard trying to live with multiple conditions? The rheumatoid consultant ( only see once ) muttered ' we won't be doing anything about the osteoarthritis or fibromyalgia ' ( I though rheumatologist dept dealt with these too?). They tell me to use charity health websites.

The gp surgery just tells me to ask rheumatologist as they are dealing with meds for inflammatory arthritis! As all impact on one another I am trying to gain some level of support - in your own experience ( I know areas differ ) do you find yourself being fobbed off and unable to get some coherence of care?

I am getting increasingly worse in all symptoms and the extra pain, and chronic fatigue is now affecting the brain fog quite badly as well.

I have a phone appt with rheumy nurse Fri, then am planning an email to GP surgery after that to try to get some actual support. Admit I am floundering atm. it's beginning to affect my mental health now.
Thanks
 
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Hello Sarah,

Interesting question! All my conditions were diagnosed and treated at first by a rheumatologist (since retired) at a specialised hospital for rheumatoid diseases. Although there was nothing much on offer for the chronic fatigue/M.E. at the time (30 years ago now), the rheumatoid aspect was handled brilliantly. He also diagnosed my fibromyalgia. This hospital was also one of the first in the country to set up a pain clinic and a chronic fatigue centre.

I still go to the same hospital but the first thing they always want to talk about is the RA and not the fibro. When I rang to request an appointment for the fibro a couple of months ago the specialist nurse said ‘fibro is handled by G.P’s now’. They did see me but basically offered nothing except to put me on their very long waiting list for pain management. 🙄

My G.P. defers to rheumatology, rheumatology push it back to the G.P. It’s like playing table tennis - ping, pong, ping!

Hence I have now asked my G.P. for a private referral to a different rheumatologist who also lists fibro as a condition she treats. At least my G.P. Is useful for something…

Could you try looking up rheumatoid specialists in your area & see if it says they treat both conditions? You can simply google rheumatologists in my area & then look at the profiles of each. I can understand the frustration you are experiencing. I too wrote to my G.P. looking for more help with meds etc only to be ‘pinged’ back to rheumatoid opinions. It’s no wonder mental health starts to suffer and, as we know, that makes the fibro so much worse. ☹️
 
P.S. There’s a website called ‘Top Doctors’.
 
Thanks so much @Sueb24
I appreciate your reply but am sorry you face exactly the same difficulties as I am seeing. Initially I asked for physio via gp back in January ( still waiting for that 😤). I asked gp about a month ago to explain the rheumatology, osteoarthritis and fibromyalgia impact a few weeks back... He said he hadn't received the consultants diagnosis letter but ' would call me back as soon as he received it " hmmm. That was received 5 weeks ago. I am Still waiting for that call back...

My first blood test for MTX checked last Monday,moved to Tuesday and now apparently will be done tomorrow instead! Wonder why I am so stressed?

My fibromyalgia was actually diagnosed in an ME/pain clinic after my gp surgery assumed ME was at fault. She dealt with chronic pain clinics but unfortunately signed me back into the ' care ' of my GP with assurances the inflammation side was fully researched as well. Glad she did.
I will discuss as much as I can with the rheumatologist nurse, but will send a calm concise email to my GP surgery. I will take your advice meanwhile to consider looking at a private referral.

I have begun the process of obtaining access to view my own medical notes now. I feel I need some ammo behind me, especially as it has taken me two 2 years of pain and chronic fatigue to push for further investigations to get diagnosed with both fibro and seronegative Inflammatory arthritis.

Thanks for your advice. Will get researching in case I don't get anywhere this week. Take care
 
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