Naltrexone for Long Covid

[longcovidquestions]

Has anyone tried low dose naltrexone?

I found a recent small study in women in their mid 40s who’ve been suffering for a long time… but I can only read the extract…

ldnresearchtrust.org/safety-and-efficacy-low-dose-naltrexone-long-covid-cohort-interventional-pre-post-study-abstract

it shows improvements… I’m hopeful! Would just be good to chat with someone who has taken it for this reason…

Bumping

So I’m hoping that anyone who has tried this is now back at work and living their best life, and has therefore missed this post! I may be dreaming though…

I haven't tried it (but would be interested to know what people's experiences are). I have read a few small studies about its use in Chronic Fatigue Syndrome, multiple sclerosis and autoimmune diseases however the emphasis is always on small studies (and none from uk). I have had chronic fatigue (to the point I've been unable to work for 8 years) and would love even small improvements in my health. As far as i am aware the drug isn't currently prescribed on the NHS for these situations. I'd think that more money/research is needed before it's available (if its suitable).
My one hope (selfishly) is that because more people are getting symptoms similar to cf due to long covid more money is put into research in this area because currently its diagnosis, some leaflets advising on pacing and then nothing.
People who have long covid that I know have had a faster diagnosis, seen quicker and had more aftercare (because there's money /research opportunities available). I don't for one minute begrudge their treatment. I do however hope that the research that comes out of this will help people with other disease to. I do continue to hope they'll be some progress and hopefully the long covid studies that are happening will have enough patients willing to take part in trials (I certainly would if the opportunity arose for cf patients).

Thank you for your reply @Itsanothergrunt

im sorry you’ve been dealing with this for 8 years and that it’s so bad you can’t work. I work but barely, and for myself. I do this around all my resting 🙄 and then only if I’ve managed not to screw myself over by doing something totally ordinary…

It’s shit isn’t it and I feel no one really gets it. I think longCOVID highlights the atrocious ‘care’ people with CFS/ ME have had for all these years.

fwiw I’ve not had much sense out of any Drs. I invariably know more about it than they do. The long covid clinic was similarly hopeless.

So looking around - the Westbourne clinic in Scotland appear to be very knowledgeable … they’re using this LDN. You’d need a private Dr session which is £350 before you’ve got your prescription… it’s not exactly cheap to get started. The LDN research trust are saying 3-6 months of treatment to see a difference.

I’ve looked up this online but am keen to find more info from someone who is doing it:

ldnresearchtrust.org/ldn-chronic-fatigue-cfsme

On the plus side it’s supposed to be relatively cheap to get hold of.

The thing is not one person on the 55,000 strong ‘long covid’ Facebook group has mentioned naltrexone and there’s all sorts of other things being discussed on there! Which makes me cautious…!

I have found a few other things that have helped - a bit. They’re not very exciting- and you’ve probably tried it all and much more - you know acupuncture, HRT, pacing, melatonin and diet change etc.

sorry for the long message

Hi @longcovidquestions I started LDN on Sunday evening - I’m super sensitive so started at 0.25ml.

I’ve been prescribed it for MCAS (possibly covid induced) I first became unwell post virally late 2019.

It is very much being tried as a long covid treatment. Are you on the slack body politic group? It’s odd it hasn’t been mentioned on the long covid group.

Are you in the UK? I gather Dicksons Chemist in Glasgow is the only place to obtain it

@Bambini83 that sounds a good introduction - nice and slow. I take it it’s going ok so far?

I’ll try again to understand slack… bit baffled by the set up/layout…

We are in the UK yes.

Unfortunately my MCAS symptoms have ramped up today ☹️ Waiting to hear back from my consultant to decide what to do

Sorry to hear this bambini. Thats really difficult. Hope you’re feeling a bit better now?

I'm a medical statistician and I've had a quick glance through the full study. It really is not a very useful study and it has far too many limitations to be used as good evidence for anything. The paper acknowledges the many limitations in the discussion and really it is far too small and biased to show any results that couldn't just be down to coincidence. I'm not sure if taking it would do you any harm (I am not a doctor!!) but I really wouldn't bother talking it based on this.

Also I accessed the full paper by clicking on the sciencedirect just above the background section, I didn't need to log in - maybe this would work for you.

I was prescribed it years ago but it made my fatigue worse to the point I couldn't function... I have MCAS too @Bambini83 and am intolerant to most meds, so put it down to this. I couldn't tolerate even the tiniest dose of it

So many people find it helpful though, so it's worth trying. As someone has said, Dickson Chemist sell it and they do an online consultation specifically for LDN for about £40 I think (then you also pay for the LDN)
www.dicksonchemist.co.uk/Consultation/

There's also a really helpful facebook group, now called 'Low dose Naltrexone (LDN) for chronic illness & infections'

How did you get on with this? Appreciate it's an old thread! I've got some LDN arriving this week so am curious

@Melsy88 - pleased to say it’s been a game changer. How are you getting on?

I had had several months without improvement or change really - to having better stamina and crucially, sleep. I do also feel more cheerful.

I had to increase my dosage much more slowly than the Dr had recommended, or I felt like I’d got PEM.

I was prescribed up to 4.5ml daily but couldn’t tolerate more than 4ml.

Timings wise, I now split my dose between just after breakfast and just after lunch, to even out the boost it gives me. Also if I forget to take it until tea time then it’s a struggle to sleep!

Hope some of this helps anyone else with LC.

Ah that's great to hear!
I'm taking it for MCAS so slightly different to you, but hoping it helps.
Have only done 2 doses of 0.5 so far so very much early days but no side effects so far which is a relief.
How long did it take before you felt the benefits?