LDN - Low Dose Naltrexone and chronic pain

Bones, joints and muscles
1

I've been on LDN - Low Dose Naltrexone for a few months now. It's been a bumpy road and the journey has had both positive and negative points.

I've been adjusting the dose but in so far the 3 main benefits I can claim from it are:

- some sleep improvement;

- less pain intensity;

- apparent normalising effects on some blood markers such as LDH (lactate dehydrogenase).

However I feel exhausted to an unbearable point and continue prone to inflammation. I've decided to continue treatment with LDN because I've read extensively about it and many authors say it may take up to a yer to come to fruition.

Meanwhile I've resorted to naturopathic medicine and I'm under treatment as well.

We're all different in the way we react to medications and because I've been reading so much suffering here with so little hope of remission that I thought of encouraging you of not giving up and trying new things.

I would like to share with you a recent study on LDN whose Abstract is:

"The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic painJarred Younger, [corresponding author]  Luke Parkitny, and David McLain

Abstract

Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed. We cover the typical usage of LDN in clinical trials, caveats to using the medication, and recommendations for future research and clinical work. LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.

Keywords: Anti-inflammatory, Chronic pain, Fibromyalgia, Glial cell modulators, Low-dose naltrexone, Microglia"

Younger, Jarred, Luke Parkitny, and David McLain. “The Use of Low-Dose Naltrexone (LDN) as a Novel Anti-Inflammatory Treatment for Chronic Pain.”Clinical Rheumatology 33.4 (2014): 451–459. PMC. Web. 13 July 2015.

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Hi Teresa Thank you for sharing with us, we can but try different things to help us, until hopefully 1 day a cure can be found lets hope its sooner rather than later. take care gentle hugssmile

3

Thanks for the info Teresa.  Every little glimmer of hope is very welcome.  Sorry to hear you're feeling so wiped out by it though.  Here's hoping that it gradually settles down and really benefits you long term.  Good luck with the naturopathy too - I'd be very interested to hear your progress with that as I'm done with pharmaceuticals presently, so fed up with all the really nasty side effects.

4

Thanks! We've got to take the lead in this matter. That's my view based n experience. There's a lot of loss, when you can't funtion. 

5

Hi Karen, maybe several cures ...since  we're all different. Some people have had remissions so we must have faith. XX

6

Hi Teresa I went into remission for a short time then it came back with vengance and more worse than it was before. My gp has said Im at the extreme level of fibro.my mobility has been badly affected I know have to use a wheelchair. never mind onwards upwards battle on. How are you doing today? I hope prey that everything you are trying works for you. we can but try different things take care gentle hugsxx

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Hi Karen. A wheelchair?  sad Why don't you try LDN then? I can't swear  by it yet but people with MS that is much more serious have positive results with it. So, why not try it? I know it's not easy but there are sites and groups in the UK that support it's use and doctors that prescribe it. XX

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Hi Teresa I wil look into LDN everything Ive tried so fay Ive had really bad side affects from. so just using hot waterbottles wheat bags.xx

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Thanks for letting us know. I'm sorry it hasn't worked brilliantly from the start for you, fingers crossed in the months to come it gets better.

There had been alot of talk about LDN and I personally enquired about it to the LDN organisation so it's great to hear someone's experience with it.

Do keep us updated with that and the natural treatments.

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LDN has to be started at 0,5mg and move upwards 0,5mg a week or every fortnight till a maximum of 4,5mg to tolerance. I'm now on 3,2mg because I couldn't tolerate more than this. It's a chemical and I hate chemicals. But they swear so much for it's many benefits on several organs and body systems that I'm sticking to it. At least for the time being. Yes Karen, look it up. If I were you I you I would. XX 

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I will biggrin ! End to fibro!

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morning Teresa; yes when we hear "how bad so many others are doing", we do want to try and give them alternatives (our survival kits)...so really understand where you are coming from, and will be interested if this helps you....for me, I feel I'm doing fairly well on my treatment....but then, do have it easy (and am able to take it easy, where others can't)....so maybe it is the answer for some of us...and if A Cure..all the better, and will Definately be trialing it........Bron

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Thanks for that information, very interesting, I will mention it to my specialist and see what he says.

14

Morning Teresa how are you today? I have spoken to my gp about LDN, I am unable to take it as Im alergic to opoids.I cant take anything with that in because of the bad reactions I get. I will keep using my trusted hot waterbottles take care gentle hugs

15

Just been doing a bit of reading up on LDN, with websites like the LDN Research Trust.  The UK is always so behind in these matters.  Gotta love the NHS eh.  I was particularly surprised at how cheap in comparison to other meds this option is.  They quoted something like £300 pa - .82p a day, compared to many thousands for the 'go to' drugs of choice currently used for MS etc.  Farcical really that given the well documented evidence in the US for example, we (the UK) have instigated clinical trials so that doctors can easily prescribe it.  It was very interesting to read about how it is believed to work by inhibiting endorphins so that the body produces more. Fascinating stuff - here's hoping the LDN Research Trust continues to explore this treatment so it is more widely understood and used. 

Good luck Teresa.

16

oops fibro brain - should have read 'We have not instigated clinical trials......etc', missed out the word 'not'.  Wish my brain would stop focussing on the pain and free itself up to think properly smile

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morning Loxie how are you today . My fibro fog is really bad too my concentration is quiet bad at the min.Had uiet a bad muscel spasam this morning couldnt move for 15mins, hey ho onwards upwards take care gentle hugsmile 

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Hiya Kaz, those spasms are hateful aren't they - just so life restricting.  I have horrid upper arm pain today, both arms but the right is the worst.  They just feel like lead weights and as well as the pain I have no strength in them, cant lift anything etc.  Tried changing the bed linen first thing this morning and  I couldn't even lift the duvet cover out of the airing cupboard sad I feel so flippin useless and invalided (if that's even a word).  So frustrating when I know that there's no life threatening cause for this inability and pain - I even keep checking my bicep muscles to see if they're wasting away - which they aren't, but it feels like my arms are getting weaker and weaker and I should be seeing evidence of that.  Aside from the pure exhaustion caused by continual pain, my biggest issue is now my frustration and anger at being so 'unable' - difficult to explain to anyone who doesn't have this what that feels like.  When I had a major accident a few years ago I was in a wheelchair for about a year and there was a ton of things I couldnt do but somehow I worked round it and found ingenious ways of coping and adapting and tried to make it a bit of an adventure really.  This is so different - I can see I am physically still able bodied yet nothing works properly and it's so difficult to know at any point what I can and can't do, it changes daily and hits suddenly at times.  I just want to scream in temper at times.  I went to answer my work phone a short while ago and couldn't pick up the handset with my right arm, just couldnt lift a lightweight plastic item with no weight.  Then half an hour later I moved the kitchen table a few inches - heavy oak table, no problem, no pain.  WTF - this is so silly.

Sorry to hear you're having foggy issues too today - i'm convinced mine is just that my mind is side tracked by the pain and is refusing to multi task on anything else.  All this just makes me more determined to beat this nasty nasty sprite come what may.

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Hi Loxie Im with you on how your feeling, I feel totally utterly useless. Im trying my hardest where house work is concerned. Bu trying to lift things and grasp things Im just in sheer agony I keep dropping things, Ive got irong that needs doing but cant lift and grip the iron. Ive tried several times this morning.The most upsetting thing Im finding at the min is I cant hold knife fork, so my husband got me some cutlery thats designed for people with disabilitys, I tried using it last night and still struggled with that. my husband is having to cut my food all up last night I thought he was going to have to  feed me? I hate what affect fibro is having on our bodys and state of mind.then you get idiot drs saying it doesnt existmad that makes me so flaming mad.My fibro changes daily I never know what to expect. on the plus side I managed to get 7hrs sleep last night so that was abonus and much welcomed. all we can do is plod on the best we can. take care loxie gentle hugs x

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Hi Karen,

see... who said LDN has any opioids?  rolleyes It hasn't. In fact LDN is an opioid agonist see wiki : An opioid antagonist, or opioid receptor antagonist, is a receptorantagonist that acts on opioid receptors. Naloxone and naltrexone are commonly used opioid antagonist drugs which are competitive antagonists that bind to the opioid receptors with higher affinity thanagonists but do not activate the receptors.

So, perhaps by explainig to your doctor that LDN is not an opioid but an opioid agonist, that is that it neutralises any opioids you may take, you'll be more lucky. 

XX