Does LDN make pain worse before it gets better? Can it take long before it starts to work?

Status
Not open for further replies.

SeaPhoenix

New member
Joined
Mar 10, 2022
Messages
8
I started learning about LDN early this past December and got a prescription for & started taking 1.5mg mid December. 3 weeks later I increased dosage to 3mg. A month and a half later, I had not really felt much improvement in pain and actually might say the pain was slightly worse - although it is hard to say in retrospect because it could have been a flare - so I stopped taking it for 3 weeks. just over 3 weeks ago from today, I got a new prescription, from another doctor this time to start on 0.5 mg; although the doses this time were sublingual and the pharmacist mentioned that the 0.5 mg would be better absorbed into the bloodstream and have a greater relative effect than the 1.5 mg pills I was previously taking. Now on this dose I wouldn't say pain is any better, maybe a bit worse not much so I don't feel I need to stop, but I am unsure about the effectiveness overall. The 2nd doctor which prescribed the sublingual ultra-low dose naltrexone indicated that if no effect at all was noticeable after 2 weeks it most likely wouldn't work at all, despite the plan to slowly increase dosage. However I don't want to give up just yet on LDN and remember reading online that it can take up to 3 months, or even 6 months for some people to work? What have your experiences been? Anyone had a similar experience?
 
  • Like
Reactions: Nan

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,810
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Sorry, no personal experience, since I can't get a prescription, and I've grown pretty wary of meds,
but most of this fits very well to all the lots of stuff I've read about LDN.
I can't remember it taking that long to work,
but I definitely wouldn't stop at 0.5 mg, sublingual or no, I'd go right the way up to 9mg as I've read that helping some people (rare).
The 4.5mg has always seemed a bit arbitrary to me: one researcher took a bit less than 10% of the usual 50mg of naltrexone..., I think it's better to see if there's any one dose (or changing) for "me", which is how people like your docs are now approaching it. But saying it has to work a bit at 0.5mg sublingually? I know it's a completely different case, cos it has to be balanced, but GABA 125mg sublingually doesn't do anything much for me, altho I sometimes take it between my high doses if I feel some low-serotonin symptoms coming on (seizures, sinuses), but I generally need 2g or more. And passiflora has almost been a similar godsend, but it doesn't didn't do anything at all at a normal dose of .6g, and it never occurred to me to try more until I once got desperate and took double that, which was then brilliant, since then...

(Something that really is said to often make worse before it gets better is Amand's guaifenesin, but I wouldn't recommend that at all, ain't trying. And many natural substances, and esp. homeopathy, are said to have an initial worsening effect. Which supposedly may assure us that it is working 'well'.)
 

Gardener

Member
Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
I started learning about LDN early this past December and got a prescription for & started taking 1.5mg mid December. 3 weeks later I increased dosage to 3mg. A month and a half later, I had not really felt much improvement in pain and actually might say the pain was slightly worse - although it is hard to say in retrospect because it could have been a flare - so I stopped taking it for 3 weeks. just over 3 weeks ago from today, I got a new prescription, from another doctor this time to start on 0.5 mg; although the doses this time were sublingual and the pharmacist mentioned that the 0.5 mg would be better absorbed into the bloodstream and have a greater relative effect than the 1.5 mg pills I was previously taking. Now on this dose I wouldn't say pain is any better, maybe a bit worse not much so I don't feel I need to stop, but I am unsure about the effectiveness overall. The 2nd doctor which prescribed the sublingual ultra-low dose naltrexone indicated that if no effect at all was noticeable after 2 weeks it most likely wouldn't work at all, despite the plan to slowly increase dosage. However I don't want to give up just yet on LDN and remember reading online that it can take up to 3 months, or even 6 months for some people to work? What have your experiences been? Anyone had a similar experience?
Before you jump on the fibromyalgia diagnosis rule out one more possible reason and look into cervical instability. There are tons of informative videos by Dr. Ross Hauser.
 

Gardener

Member
Joined
Jul 14, 2021
Messages
19
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
I started learning about LDN early this past December and got a prescription for & started taking 1.5mg mid December. 3 weeks later I increased dosage to 3mg. A month and a half later, I had not really felt much improvement in pain and actually might say the pain was slightly worse - although it is hard to say in retrospect because it could have been a flare - so I stopped taking it for 3 weeks. just over 3 weeks ago from today, I got a new prescription, from another doctor this time to start on 0.5 mg; although the doses this time were sublingual and the pharmacist mentioned that the 0.5 mg would be better absorbed into the bloodstream and have a greater relative effect than the 1.5 mg pills I was previously taking. Now on this dose I wouldn't say pain is any better, maybe a bit worse not much so I don't feel I need to stop, but I am unsure about the effectiveness overall. The 2nd doctor which prescribed the sublingual ultra-low dose naltrexone indicated that if no effect at all was noticeable after 2 weeks it most likely wouldn't work at all, despite the plan to slowly increase dosage. However I don't want to give up just yet on LDN and remember reading online that it can take up to 3 months, or even 6 months for some people to work? What have your experiences been? Anyone had a similar experience?
Before you jump on the fibromyalgia diagnosis rule out one more possible reason and look into cervical instability. There are tons of informative videos by Dr. Ross Hauser. I myself had fibromyalgia and was completely cured with 9mg of LDN. But if it hasn’t helped you look into cervical instability. Good luck. Wishing everyone good health.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,810
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
As your editing it has somehow doubled your post, you could delete the first one (if that possibility hasn't expired yet).... 👐
cervical instability
Hmm, whilst I think this concept is sometimes pushed too hard, all my physios saw the neck as the needle's eye for our nerves.
And getting it treated and keeping it supple with various stretches several times a day is good in any case, I'd suggest.

was completely cured with 9mg of LDN
Thanks for reminding me.
Somewhere someone asked and said their doc had said if it doesn't work at least a bit at 0.5mg then it won't work if you increase.
From what I've read I'd think it's best to go up from 0.5 right up to 9 and see where it's best and if that is worth it, is that your experience?
 

WhoDat83

Active member
Joined
Aug 3, 2020
Messages
57
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
LA
Before you jump on the fibromyalgia diagnosis rule out one more possible reason and look into cervical instability. There are tons of informative videos by Dr. Ross Hauser. I myself had fibromyalgia and was completely cured with 9mg of LDN. But if it hasn’t helped you look into cervical instability. Good luck. Wishing everyone good health.
Gardener, can you articulate a little more what you mean with "completely cured"? like no fibro symptoms anymore?
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,180
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Gardener, can you articulate a little more what you mean with "completely cured"? like no fibro symptoms anymore?
Just want to jump in here to say that there is no miracle cure for fibromyalgia. LDN helps some people, and doesn't do a thing for others, but it is not a cure.
Just like everything else that people try to help manage the symptoms of Fibro, such as herbs, supplements, certain exercise, dietary changes, and so on, it is only one of the many things that might help for some people.
While some things have been known to help some people a great deal, I would recommend being wary of believing that it or any other one thing has "cured" fibromyalgia.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,810
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
LDN helps some people, and doesn't do a thing for others
I'd add that about half had increase in pain or side effects, despite changing the dosage (I don't seem to have written it on this thread, but having looked for quite a lot of people's experiences all of the place as well as about 20 study abstracts last year.)
@Gardener is an exception in that it works so well (but not the only one). It's worth trying, but carefully.
Many other things have much more proof of them working - but again only a bit and only for some, as our fibro etc. varies so much.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,810
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Just asked someone to report back and she says 4.5mg in the morning is reducing pain by 25%, no side effects, so she's continuing.
 

Faustina

Member
Joined
Oct 18, 2021
Messages
19
I would like to know what LDN is?
I do have a long-time friend who has suffered with Fibromyalgia for years. She heard about the guaifenesin protocol, so she tried it.
She told me that she never experienced any worsening of her symptoms, but that she began to have less pain. Now she says that she is completely pain-free with no side effects, and she continues to take a daily maintenance dose of guaifenesin. This news from her is so exciting to me. I wasn't interested in the guaifenesin protocol when I first heard about it, because anytime I had ever tried guaifenesin for a mucous problem with a virus or such, I always got side effects from it, and would give up trying to use it to fight the mucous. My friend has done so incredibly well on it, that I can't resist the idea of giving it a try and hoping.
Pray I will function enough during the 'worsening' phase to be able to tend to the necessary things of life, and that it is a successful treatment. I would be blest to hear from anyone here who has done it and had things workout well. I understand that avoiding salycilates completely will be difficult for me since I am already so very restricted on what I can eat.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,810
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I would like to know what LDN is?
I do have a long-time friend who has suffered with Fibromyalgia for years. She heard about the guaifenesin protocol, so she tried it.
She told me that she never experienced any worsening of her symptoms, but that she began to have less pain. Now she says that she is completely pain-free with no side effects, and she continues to take a daily maintenance dose of guaifenesin. This news from her is so exciting to me. I wasn't interested in the guaifenesin protocol when I first heard about it, because anytime I had ever tried guaifenesin for a mucous problem with a virus or such, I always got side effects from it, and would give up trying to use it to fight the mucous. My friend has done so incredibly well on it, that I can't resist the idea of giving it a try and hoping.
Pray I will function enough during the 'worsening' phase to be able to tend to the necessary things of life, and that it is a successful treatment. I would be blest to hear from anyone here who has done it and had things workout well. I understand that avoiding salycilates completely will be difficult for me since I am already so very restricted on what I can eat.
Hi Faustina: LDN is the med naltrexone, which is usually given at a dose of 50mg to block the effects of (alcohol or) opioids after withdrawal. A doc once tried it low dose, "LD" at "less than a tenth", i.e. 4.5mg and that helps some people, whilst further trying out shows that anything between 0.5 and 10mg might help .... or might harm.

I'll paste my answer to the guaifenesin question over into your new guaifenesin thread... ➡️ here.
 
Last edited:
Status
Not open for further replies.
Top