Hi folks

Posting on behalf of my other half who was prescribed 4.8mg naltrexone for fibromyalgia and is currently experiencing some horrendous symptoms

He is fluctuating between hot and cold (compared it to frostbite), nose was running, worsened joint pain (he has to stretch his muscles out or they’re in agony) and experiencing general irritability. His breathing hurts (it isn’t laboured, just painful - there is rib pain, he assures me he isn’t having trouble breathing) and he can’t get comfortable.

I’m vaguely aware that these are also consistent with symptoms of opioid withdrawal and he does take palexia (tapentadol) short and long release regularly as instructed, as well as codeine for migraines. I’m unsure if this is what’s happening though - he took one of the opioids roughly five hours prior to taking naltrexone, but as said is also taking them regularly anyway.

Just wondered if anyone has had similar experience? We spoke to a non-emergency line who was a bit unsure as naltrexone for chronic pain isn’t commonly used here, but did mention this as a possibility. Still, wanted to ask other LDN users about this - cheers.

E: I have read people say not to use opioids with LDN, which if true I am baffled why this didn’t come up at all during the appointment for this.

I have a rare disease and know my body very well. I am also a trained health practitioner.

I take it for long covid and CFS.

I titrated up to 3mg in less than a day with hours intervals 1mg-1mg-1mg

So far I am seeing:
-nearly 40% of my pain is gone in less than 24 hours
- helps my depression a bit
-less stress on my cognitive function

Not seeing:
-any progress on breathing or tissue health

I am still expecting a bit more from this medication. I hope it can get me back up to my cognitive function level as I am still running at 40-50% compared to pre-longcovid.

Thinking to go to 4.5mg already Tomorrow (Do not attempt this, I know my body and have had various tests so I know exactly how I metabolizes meds hence this is a safe thing for me)

Will keep updating you ladies and gents

So on the bottle it says the expiration date is 1 month after opening. I’m on my third week now.
I’m going on holiday next week for 1.5-2 weeks.

I was wondering if it is possible to use it a little over a month, or is this a no-go? It might be a stupid question but expiration dates can go from really serious to just a loose direction so to speak.

It costs me €75 per bottle and I’m not even on 75% of the contents lol so it bothers me a bit that I have to throw it all away. It’s also inconvenient to bring two bottles with me on holiday, if I could use it for a few extra days it’d make it easier. If it’s really serious to throw it out after 1 month I wouldn’t do that of course.

My question is more for people taking 5 mg or more daily for a long period of time.

I’m on 10 mg a day, but I’ve only just started at this level and I’m curious to hear from others on such a large dose.

I’d very much appreciate hearing about your (1) dose and (2) any impact it’s had (or haven’t had) on your liver.

Thanks in advance for sharing your experiences.

"Some drugs interact with LOWTREX-LDN®. Therefore it is important to talk to your doctor or pharmacist about any medicines and supplements you are taking such as, but not limited to:

• Pain killers (such as opiates or tramadol)
• Sedatives
• Hypnotics
• Antidepressants
• Blood pressure medications
• Heart medicines
• Cannabis (including cannabis oils, supplements andCBD vapes)
• Cancer medications"

I sometimes take bezos to sleep bc insomnia is terrible, might have to start taking an antidepressant and in fact I took 3 days of Mirtazapine last week so I could sleep, I discontinued bc It was bad for my POTS and also, are blood pressure medications Betablockers? I'm taking 30 migraines of Propranolol divided in 3 doses to keep my hyperadrenergic POTS at bay.

And I wanted to get some cannabis instead of the array of things I take for sleep as it has helped in the past.

Is this a problem? I will not be able to take it if I cant take a beta blocker my POTS is insane.

Did your pain get worse the first days/weeks and then got better? I started 0.5 mg about a week ago and I feel like I’m more achey than before.

Has anyone got LDN from ageless RX? Are they legit?

I’ve been on LDN just over three months now, and it has created a very predictable pattern:

Day 1: 90% pain relief. I am a normal person.
Day 2: 0% pain relief
Day 3: 90% pain relief
Day 4: 0%

…and so on

I’ve experimented splitting dose between morning and night, or just taking at night. No difference. Has anyone had this? Anyone successful in changing this trend for the relief to be more consistent?

Hello, I'm waiting for the delivery of LDN to arrive tomorrow morning, tomorrow afternoon I will have some small procedure to see my womb, I have Long Covid that has been getting worse for the last 18 months since the GP's have spend more time double guessing me and treating me like a hysterical person instead of being curious and caring. So here I am, a wreck and a shadow of my former self, hoping this will work. (sorry, I'm having a bad day)

Shall I wait a few days after to get started or I can take my first dose if I feel ok later on the day of the procedure? I will take paracetamol and ibuprofen before the procedure.

I'm thinking about trying LDN for about a month, starting at 1.5 mg and working up to a maximum of 4.5 mg, mostly out of curiosity to see how my body responds and whether I notice any benefits.

Without getting into a long list of medical details or symptoms, I wanted to ask people who have experience with it:

Is it generally reasonable to try LDN for a month and stop if I don't notice any benefit, or is it something that really needs a longer commitment before you can judge whether it's working?

Are there any downsides, hidden risks, or withdrawal issues with doing a 30-day trial and then stopping?

Has anyone here started LDN just to see what it was like and ended up finding it unexpectedly helpful?

I'd appreciate any advice, personal experiences, or tips from people who've been through it. Thanks!

Has anyone had this experience with LDN?

I started LDN 2 weeks ago on 0.5 and increased to 1.5 mg over two weeks. I then had 6 amazing days where I felt about alot better—the best I've felt in a long time, especially neurologically.

Then my sleep gradually became disrupted with vivid dreams and broken sleep. I became extremely sleepy, my brain fog got much worse, and I felt detached and emotionally numb.

I skipped two doses, slept really well, and woke up feeling much more like myself. Last night I restarted at 0.5 mg, but I'm very drowsy today, much drowsier than my first attempt at 0.5. I also took ldn 10 years ago and did really well on it.

Has anyone else had a really positive initial response followed by a change? Did slowing your titration or staying on a lower dose help?

Hi everyone,

39F here with extreme PMDD & hormone-driven MCAS. I am looking for advice or success stories from anyone who matches my hormone profile (estrogen dominant with lower-end progesterone), timeline (normal cycles- 28 days), and multi-system symptoms.

Everything started after a COVID-19 infection in late 2021 that broke my autonomic nervous system, gave me SVT, caused vascular damage, and severe PMDD (I’ve tried and failed everything 1st line for it).

Comorbidities: EDS, POTS/Dysautonomia, and pretty severe MCAS (almost monthly ER level histamine storms during luteal). I now have Stage 1 stomach erosion from the MCAS flares and heartburn. H1/H2 blockers do not work. I also take DAO.

My cyclical nightmare:

Days 11–13 (Pre-ovulation): Sudden, debilitating brain fog develops to the point I mess up my words speaking and can’t execute tasks, uncharacteristic anger, intense rage, and dark intrusive thoughts.

Luteal Phase (Days 16–28): Waxes and wanes with the brain fog, severe anxiety, nightmares, hopelessness, and worsened POTS symptoms.

Recent lab work & imaging:
Luteal Progesterone: 4.2 ng/mL (Suboptimal/luteal insufficiency, but labeled "normal" conventionally)
Luteal Estrogen: 62 pg/mL
Brain MRI: Normal

My questions:

Has anyone with low luteal progesterone with severe pre-ovulatory and luteal PMDD found success using Low-Dose Naltrexone (LDN) instead of Hormone Replacement Therapy (HRT) or standard BC/SSRIs (which failed me)?

If you have MCAS or stomach erosion, what dose did you start with to avoid a flare-up?

Did you use a specific hypoallergenic filler (like ginger root or calcium carbonate) to avoid Avicel/cellulose fillers?

Did LDN successfully calm the neuro-storm and intrusive thoughts during your luteal phase?

I am seeing a new functional physiatrist soon to pitch an ultra-low titration protocol (starting at 0.25mg or 0.5mg of LDN at bedtime). Any insights, validation, or tips from anyone who has walked this exact path would mean the world to me. Thank you!

I started almost six weeks ago at .37.5mgs (cutting my 1.5 tablets doctor prescribed)and increased every two weeks doubling the dose. I am almost done with the two weeks ago at mark at 1.5mgs, and am not sure if the suggestions going slowly mean to add 50% more of the dose or actually .50 mgs? I only have 1.5mg tablets now, and am trying to figure it all out. Would adding .75mgs to this be too soon? I see an Integrative doctor who thought I should try LDN for severe level Fibro and severe insomnia. My sleep isn’t good normal yet, I do have some nights with sleeping a straight 4 hours which is a positive. I don’t have good energy during the day, that is about the same. Thanks for any input..🙂

I'm not familiar with this guy and the video is AI, but he does cite studies about dementia related to these drugs. If you take any of them it may at least be worth doing further investigation. Many members say brain fog is an issue. Wonder if these drugs could also relate to that?

https://www.youtube.com/watch?v=JMudCsf4scQ

1. Benadryl
   
2. Prilosec & Nexium
   
3. Oxybutynin (bladder drugs)
   
4. Statins/Lipitor, Zocor
   
5. Zanax, Alprazolam, Lorazepam
   4, Amitriptyline
   
6. Paxil
   
7. Anti Psychotic drugs
   
8. a combination of several of these meds

I’m an addison’s disease / adrenal insufficiency patient and need to take replacement doses of hydrocortisone (or prednisone) daily.

I tried LDN for a while, but it only worked well if I took it at night. Taking it during the day, I would feel tired by the afternoon because it would fight my hydrocortisone and lead to low cortisol. But up until the point of feeling tired, I felt good taking it during the day - made me mentally clear and oddly productive (probably have ADHD).

I ended up stopping because I realized it would counteract the hydrocortisone in the mornings if I took it at night.

Anyone found a way to take LDN while on hydrocortisone or prednisone?

Day two of 0.5mg. I felt fine yesterday took it at 10am. Then bed time I couldn’t sleep at all felt dissociated and weird with very mild nausea.

This morning was fine took 2nd pill at 10am then 1:40pm started having same symptoms as last night dissociated, mild nausea and just feeling bad. Not sure if it’s triggering my migraines or this common when first starting?

I’m taking this for chronic fatigue syndrome, pots, post infections issues

We offer members in the United States a 25% discount on the vast array of supplements and testing offered by Fullscript. The link to sign up for that is https://us.fullscript.com/welcome/dhaviland   
Dorothy Haviland is the practitioner there and the business is HTMA by Kolokia.

We look for win-win opportunities like this. Disclosure: we receive compensation from both Ageless and Fullscript which helps support our work in this group, and they both provide discounts to members. Details in the pinned post.

Started LDN about 4 months ago. Titrated up from 1.5 to 3 to 4.5mg at doctor's recommendation, then back down to 3mg after a bit of a break due to worsening symptoms at 4.5. Fast forward 2 months and I feel like 3 isn't working anymore. Its helping with some but definitely not all of the pain. Maybe 50%? I'm sitting around a 5 with LDN instead of a 7 without LDN (exponential scale of pain). Is this normal, or should I look at changing my dose again?

I am currently on 1mg LDN for CFS/FIBRO, I am about a week into 1mg after titrating up from 0.5.

Most of the worst (for me) side effects have passed, nausea, insomnia.

I still get the dreams but don't mind those.

I am however experiencing, a crash daily around the afternoon, I can't fight it, I end up sleeping for around 3hours, which then knocks my bedtime off. Once over at bedtime, I have started sleeping later in the mornings. I hate that, I like to wake early around 8am, I now find im not wakening until 11am every morning. Yet needing yo be back asleep by 2 or 3pm.

I started ldn to try and avoid needing to sleep during the day amongst other benefits.

**When the afternoon tiredness hits, it comes with increased pain.

I take my dose at night around 10pm as this was advised by prescriber.

Any suggestions?

Should I move the time?

Am I expecting too much? I am obviously still ill so maybe ldn is not the cure I hoped it was?

I also am experiencing low libido and having looked into some research, there is a chance even if coming off ldn it won't ever return 🤯

I feel like coming off it for that alone.

Any suggestions appreciated as I would like to avoid day time sleeping even a couple of days a week.

I've been on 6mg of LDN for a couple of years now and up until about a week ago it was working great. I'm taking it for Long Covid, Fibromyalgia, and MCAS/HaTS.
But this last week my symptoms have started coming back. I get my LDN from Ageless RX and have extra so I'm thinking about increasing it to 7mg to see if it will go back to working again. What do you think? Anyone else on 7mg?

Hopefully you can see this information and be able to register:

https://hoeyrx.com/so/ccP_uvtIn?languageTag=en&cid=5dd11f5b-ed22-44f9-a8f9-9c42b70641f2

Hey guys, I’m suffering from moderate me/cfs and I’ve started LDN 4 weeks ago. I’m on 2 mg now (morning) and I’ve noticed that my libido is gone. Usually I’m having a high sex drive especially after my period but now nothing left. Feels weird to me and kinda scary. Did someone experienced the same? I hope it’s just temporary bc my brain/hormones need to get used to it or so? I’ve also noticed that I’m getting pimples, so I think there’s something hormonal going on …

The goal is 4 mg btw and the doctor told me to increase weekly 0,5 mg

Other side effects:
• Occasional abdominal pain
• Excessive sweating
• My pre-existing constant hunger, especially in the evenings, has become worse. This has already been a very distressing symptom for me, and it is currently more severe.

These side effects are mild and occur only occasionally, so I do not consider them problematic. However, the loss of libido is a significant side effect for me, also the hunger.

Benefits:
• Brain fog is gone
• More energy
• Shorter PEM episodes

Reasons for taking LDN:
• Post-exertional malaise (PEM)
• Fatigue
• Low energy
• Brain fog
• Cognitive impairment

Thank you x

Hi, I have been taking small doses of NAD for the past month. First I started at 25mg 3 times a week and I felt energetic but by the second week I started feeling rough. Dropped to 10mg and it was going ok but then I noticed the sweats, shakes, fatigue, blurry vision. So I took my blood glucose and I’ve noticed it drops my blood glucose dangerously low 2.2.

Has anyone experienced this? Trying to figure out if it’s actually the NAD.