Calling all Low Dose Naltrexone experts - Fibromyalgia Acti...

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Calling all Low Dose Naltrexone experts

jostafford0 profile image
10 Replies

Hi all,

I need advice please - I started on LDN 2 nights ago & it’s given me depression & chronic tiredness. I have Hashi’s & UC as well as ME so didn’t feel too good to begin with but LDN has made everything much worse. Can anyone let me know if these side effects are normal & will go away? Thank you Jo x

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desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

I have not heard of anyone have side effects like you describe with LDN although increased/ decreased energy is mentioned for naltrexone. When pilots were done for fibro and LDN the side effects were nausea and colourful dreams with the lower dose meaning less side effects.

You really need o go and see your GP about it as it could be an interaction with exiting meds.

jostafford0 profile image
jostafford0

Thank you for your reply - I’ve obviously got something wrong with my serotonin levels then & my body can’t seem to produce more. I haven’t taken anything different apart from starting LDN so I know it is this causing it. I actually felt suicidal yesterday! I’ll try & find the research forum on here - thank you x

jostafford0 profile image
jostafford0

Thank you - I should have researched more thoroughly than I did. All I’d heard was good things about it. I didn’t realise I’d get worse to get better and there is no time limit for my body to compensate and no guarantee it could happen at all. Oh what a mess I’m in and I totally screwed up Christmas too!

jostafford0 profile image
jostafford0

Yes you’re right, I am just feeling sorry for myself. I’ll dust myself off & try the next thing in the New Year & hopefully have more luck!

HMBradley53 profile image
HMBradley53

What dose did your Dr put you on ? I started at 4.5mg right off from the beginning with no side effects it usually takes about 3 months before you get full effects of the medication I'm thinking a couple days is too soon to have any side effects from LDN. What did your Dr say ?

jostafford0 profile image
jostafford0

I took 1.5mg both nights. I didn't take any last night and I am feeling much better. I must be very sensitive to the medication due to my under active thyroid and adrenal fatigue.

Glosgran profile image
Glosgran

I started at a dose of 0.25mg and worked up slowly. The advice with LDN is to 'start low and go slow' to allow your body time to adjust. LDN is not like any other type of medication and is not used to mask symptoms but to help balance your immune system and allow your body to begin to heal itself.

I found this advice for those starting out with LDN in a support group :

"It just depends on what's going on in your body causing you to feel sick. Some of us started LDN low and slow with very inert fillers and started to feel better only to feel hit by a brick suddenly. It felt like one step forward, 10 steps back. But really it was just a sign that our immune systems, which had for so long been fighting us instead of infections, finally woke up and remembered it's real purpose. It does a housecleaning getting rid of any latent infections which is great, except it feels like having the flu.

If you're fighting Lyme, this phase can take ages as spirochettes are killed and their toxins are metabolized. For folks with less difficult leftover bugs, it usually stops within a week or two and then the real healing begins.

If you're just starting out, be patient. This is not a fast medication. And for most of us it's not a miracle cure. It takes slow changes in dose and waiting for the body to respond. But it works for nearly everyone if you just stick with it. If you don't feel better after the first 3 or 4 weeks, lower your dose until you can take it and feel ok. Then just move up slowly and steadily."

Another person posted this helpful information:

" The way LDN works, from my laymen's understanding of it is...upon ingesting it, naltrexone blocks the opioid receptors in your brain. Upon doing this for a few hours after dosing, your brain says, "holy cow, it's awfully dark in here...let's turn on the lights and produce some endorphins!" Thereby, your brain is actually "tricked" into producing endorphins, once your opioid receptors are no longer blocked by the naltrexone and "cleared" (hence, the "rebound effect"). Endorphins help your body by protecting your cells and organs and it also boosts your immune system as a whole. The reason why you heard about "clearing the receptors" by skipping a dose once in a while is because sometimes it's like the office copier getting jammed if you keep adding work to it without cleaning it out once in a while. If you get into a routine, sometimes the opioid receptors don't completely clear off before the next dose. If you don't give a day to "clear" it out once in a while, sometimes one of the next few jobs will be jammed. If you maintain it and make sure it gets cleared out then it ensures a smoother operation without jams. I hope that made sense!

Also, not everyone needs to do this. If you're in the group that needs LDN for pain management and it is working for you on a daily basis, you don't have to change a regimen that is already working for you."

I have been taking LDN for the past 8 months (still experimenting with it!) and I find it best to skip a day or two if I get increased stiffness or aching. I haven't had the miraculous results that some people get but it has put an end to my migraine headaches that were becoming more frequent and more severe and it's helped improve the quality of my sleep. You can also find that you feel worse if the dose is too high for you. There is no 'one size fits all' with LDN and you need to experiment to find the optimal dose for your body. Some people never get above 1mg and others don't feel right until they go over 4.5mg and up the dose to 6mg or more. Some people cycle their dosing e.g. every other day or skip once a week or 4 days on, two days off etc.

I don't know if I'm allowed to post links to helpful LDN websites on here but you're welcome to message me if you want advice on where you can find more useful information.

jostafford0 profile image
jostafford0

Thank you for taking the time to get back to me Glosgran, I can honestly say I felt like I had come down with full blown depression after taking LDN. It was Christmas day and I was in tears and couldn't move off the couch I felt so exhausted. Needless to say my day was ruined. I thought I was taking the lowest dose at 1.5mg but now realise I should have started off lower. Maybe I can cut the tablets into 3 and start from there. I need to do this again when I don't have work or anything to do the next day just in case it happens again.

miccika1 profile image
miccika1

This medication definitely acts on your brain so I'm not surprised you got these side effects. I started at 1.5 and had really horrible nightmare. Very vivid, like im in a horror movie. I did read that that's the possible side effects and i kept taking it as by the next night i would forget what happened and decide to try again. It took about two weeks to get eid if nightmares then i increased to 4.5. I'm able to take it without side effects now. When i complain about nightmares my doc suggested to take it in the morning. Maybe a different time of day would work for you. I know it's suggested to take it before sleeping but if you have issues with it why not try another time of the day?

jostafford0 profile image
jostafford0

Hello - I didn't try it again. It was such a horrible experience I've haven't plucked up the courage to have another go. Jo x

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