Low dose Naltrexone
- Thread starter Cort
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Yes, I didn't find one either. In any case, can't hurt to have one that compares different meds for modulation - ratios of helpful/not helpful
The LDN poll is in this General Treatment Section about 11 threads below this one. It's not a Sticky as other polls are.
It was started by Jace.
It was started by Jace.
Update: day 3 on .1-.15mg. Headaches still pretty bad. Upped my magnesium and added riboflavin and although they seem to help they are causing major reflux issues so I have to back off. Stomach is bothering me too. Is that the ldn or magnesium or b2? No idea but it really hurts.
My question is - how long did you all stay @ a certain dose before upping. Particularly the person who started at .1mg...can't remember who that was. Do you saty at a dose until you have ZERO side effects or that they are just tolerable? Is it about a week?
Thanks!
Oh - and last night I was beyond wired - could not sleep. Interesting because the first couple of nights/days I had worse fatigue. Then the insomnia hit last night. I've also been having vivid dreams - all at a very very low dose. I just want the headache to go away.
My question is - how long did you all stay @ a certain dose before upping. Particularly the person who started at .1mg...can't remember who that was. Do you saty at a dose until you have ZERO side effects or that they are just tolerable? Is it about a week?
Thanks!
Oh - and last night I was beyond wired - could not sleep. Interesting because the first couple of nights/days I had worse fatigue. Then the insomnia hit last night. I've also been having vivid dreams - all at a very very low dose. I just want the headache to go away.
Hi
I'm the one that started at 0.1mg. I stayed on it for about a week before slowly increasing. I waited until I felt more able to cope. But it's a very individual thing as you stay on the dose until you feel strong enough to try a higher dose.
There is a Yahoo group that deals with VERY low dose Naltrexone & I believe stay on a tiny dose - I haven't checked out that group yet.
Stomach problems appear to be common to most people - I initially started on 1.5mg but the stomach pains were just awful which is why I backed down to 0.1mg. They eventually settled.
Vivid dreams & insomnia are the most common side effects which again can settle. People seem generally to get better quality of sleep
Sorry I can't give a definitive answer but it appears LDN reacts in a very individual way and only you can decide when to adjust doses or whether you can deal with the side effects.
I'm in so much pain at the moment that I decided to stop LDN (I am up to 1.5mg) - whether this is down to LDN or a bad FM flare I don't know but I have to cut out LDN to see if it settles.
EDIT: I've just been reading the VERY low dose Naltrexone Yahoo boards. Still as confusing but I've read a few things.
Some people do well on alternate nights dosing. Some do well with taking a week or 2 break (and feel good in that time so sounds like delayed reaction?). As it's a very low dose board people are mainly only taking between 0.5 -1.5.
For people having problems maybe reading this board or posting on it may help.
Good luck
I'm the one that started at 0.1mg. I stayed on it for about a week before slowly increasing. I waited until I felt more able to cope. But it's a very individual thing as you stay on the dose until you feel strong enough to try a higher dose.
There is a Yahoo group that deals with VERY low dose Naltrexone & I believe stay on a tiny dose - I haven't checked out that group yet.
Stomach problems appear to be common to most people - I initially started on 1.5mg but the stomach pains were just awful which is why I backed down to 0.1mg. They eventually settled.
Vivid dreams & insomnia are the most common side effects which again can settle. People seem generally to get better quality of sleep
Sorry I can't give a definitive answer but it appears LDN reacts in a very individual way and only you can decide when to adjust doses or whether you can deal with the side effects.
I'm in so much pain at the moment that I decided to stop LDN (I am up to 1.5mg) - whether this is down to LDN or a bad FM flare I don't know but I have to cut out LDN to see if it settles.
EDIT: I've just been reading the VERY low dose Naltrexone Yahoo boards. Still as confusing but I've read a few things.
Some people do well on alternate nights dosing. Some do well with taking a week or 2 break (and feel good in that time so sounds like delayed reaction?). As it's a very low dose board people are mainly only taking between 0.5 -1.5.
For people having problems maybe reading this board or posting on it may help.
Good luck
leaves
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I stayed on every dosage for 3 weeks and then upped, I think I went from 1 mg to 3 mg to 4.5 mg but cant remember (sorry, my memory sucks 
) oh and the change to 3 mg gave me severe side effects, so i would probably with hindsight go from 1 to 2 to 3.
) oh and the change to 3 mg gave me severe side effects, so i would probably with hindsight go from 1 to 2 to 3.dsdmom
I stayed on each dose about a week - see my earlier posts. The pain and flu-like symptoms got worse and worse and they became intolerable at 1.5mg. I still had severe pain 3 weeks after stopping, but it's a bit better now.
I never had any probs with insomnia, but I did get some nausea. My appetite was very poor throughout and I lost a lot of weight.
Jenny
I stayed on each dose about a week - see my earlier posts. The pain and flu-like symptoms got worse and worse and they became intolerable at 1.5mg. I still had severe pain 3 weeks after stopping, but it's a bit better now.
I never had any probs with insomnia, but I did get some nausea. My appetite was very poor throughout and I lost a lot of weight.
Jenny
I guess this is really so individual - wish there were more guidelines as far as dosing schedules and what to do if you have problems....but it's really left up to us,huh?
I had horrible stomach pain last ight and I think part of it was/is constipation. So something is causing this - it couldn't be the increase in magnesium as that is supposed to do the opposite. Riboflavin is supposed to help constipation as well so the only thing left that is new is LDN. I don't see that listed as a side effect but I don't know what else it could be. Anybody else have this problem?
Still having headaches although haven't been on it even a week yet so going to keep at it...
Jenny, interesting theory about toxins. Wonder if there is anything else we can do other than massage which is pricy and I can't afford right now!
I had horrible stomach pain last ight and I think part of it was/is constipation. So something is causing this - it couldn't be the increase in magnesium as that is supposed to do the opposite. Riboflavin is supposed to help constipation as well so the only thing left that is new is LDN. I don't see that listed as a side effect but I don't know what else it could be. Anybody else have this problem?
Still having headaches although haven't been on it even a week yet so going to keep at it...
Jenny, interesting theory about toxins. Wonder if there is anything else we can do other than massage which is pricy and I can't afford right now!
how LDN works very good explanation: http://www.youtube.com/watch?v=xr-n8jMLenU
Hi all, here's a link to the LDN poll I put up http://www.forums.aboutmecfs.org/showthread.php?5212-LDN-how-s-it-working-for-you
I started on 1.0mg, and went up each week by 0.5mg. I have had some unpleasant symptoms, but they didn't last.
The liquid naltrexone is bitter, a bit like Fernet Branca (also comes from Spain) or Angostura bitters. I can hack it - it puts hairs on your chest
I have had the best two weeks recently since I got ME. I was (note was) at about 60% and crying with the relief. But my daughter has brought a cold home, and today I'm back on the couch.
:sofa:
I started on 1.0mg, and went up each week by 0.5mg. I have had some unpleasant symptoms, but they didn't last.
The liquid naltrexone is bitter, a bit like Fernet Branca (also comes from Spain) or Angostura bitters. I can hack it - it puts hairs on your chest
I have had the best two weeks recently since I got ME. I was (note was) at about 60% and crying with the relief. But my daughter has brought a cold home, and today I'm back on the couch.
:sofa:
Hi Jace
Great to hear you had 2 great weeks.
What dose are you on now? How long have you been taking LDN? And are you taking Vitamin D along with it?
I've stopped again but will get back to it soon. I'm recklessly thinking of starting at a high dose maybe 3ml to see if that suits me better but that's just a wild thought going through my exhausted brain!
Good to hear your great news.
Great to hear you had 2 great weeks.
What dose are you on now? How long have you been taking LDN? And are you taking Vitamin D along with it?
I've stopped again but will get back to it soon. I'm recklessly thinking of starting at a high dose maybe 3ml to see if that suits me better but that's just a wild thought going through my exhausted brain!
Good to hear your great news.
I have thoughts of doing something similar, so if you try it, please let me know how it goes!!!
Thanks for the youtube video Frank! I thought it was a good, concise explanation.
I started LDN at 4.5mg and it worked out fine for me. I take it during the day which my doc told me to do. It can provide the same effectiveness as taking it at night without the insomnia. I know it varies so much from person to person but I just wanted folks to know that it can be done and work out. I didn't have the nasty side effects that so many of you have struggled with. I hope more people have success with this med.
One thing that I remind myself about is that even if it doesn't have obvious effects on this illness (although for me I do have increased mental clarity), it does prevent other illnesses like cancers which would completely destroy an MEers life. I can't imagine trying to fight off another serious illness at the same time.
I hope you "reckless" gals have success with the higher dose!
I started LDN at 4.5mg and it worked out fine for me. I take it during the day which my doc told me to do. It can provide the same effectiveness as taking it at night without the insomnia. I know it varies so much from person to person but I just wanted folks to know that it can be done and work out. I didn't have the nasty side effects that so many of you have struggled with. I hope more people have success with this med.
One thing that I remind myself about is that even if it doesn't have obvious effects on this illness (although for me I do have increased mental clarity), it does prevent other illnesses like cancers which would completely destroy an MEers life. I can't imagine trying to fight off another serious illness at the same time.
I hope you "reckless" gals have success with the higher dose!
Diva asked
I'm up to 4.5mg now, for the last ten days. I'm taking 800 IU of D3 with it. I started taking it at the end of April, and started on a 1mg dose, increased by 0.5mg every week.
Yesterday I felt rubbish, my daughter brought a streaming cold home last week, and I guess I'm dealing with that, although I have no cold symptoms. It's been ages since I had symptoms of colds or flu. Only ME Today I'm ok.
I'm up to 4.5mg now, for the last ten days. I'm taking 800 IU of D3 with it. I started taking it at the end of April, and started on a 1mg dose, increased by 0.5mg every week.
Yesterday I felt rubbish, my daughter brought a streaming cold home last week, and I guess I'm dealing with that, although I have no cold symptoms. It's been ages since I had symptoms of colds or flu. Only ME
Today I'm ok.That's great you have been able to do a steady increase each week.
Due to Stephen Dickson's advice I've starting taking 1000iu D3 a day. But I'm still not back on LDN as I'm having an awful pain flare in my neck, jaw, ear which doesn't want to settle.
So until then I'm not back on LDN - hopefully soon!
Getting a cold could be a good thing! I get tons of viruses which hang on for months which I think is the difference as my main diagnosis is FM. I'm hoping LDN will modulate my system to be able to zap all the viruses before they take hold.
Hope you feel better soon.
Due to Stephen Dickson's advice I've starting taking 1000iu D3 a day. But I'm still not back on LDN as I'm having an awful pain flare in my neck, jaw, ear which doesn't want to settle.
So until then I'm not back on LDN - hopefully soon!
Getting a cold could be a good thing! I get tons of viruses which hang on for months which I think is the difference as my main diagnosis is FM. I'm hoping LDN will modulate my system to be able to zap all the viruses before they take hold.
Hope you feel better soon.
I'm up to 4.5mg now, for the last ten days. I'm taking 800 IU of D3 with it. I started taking it at the end of April, and started on a 1mg dose, increased by 0.5mg every week.
Yesterday I felt rubbish, my daughter brought a streaming cold home last week, and I guess I'm dealing with that, although I have no cold symptoms. It's been ages since I had symptoms of colds or flu. Only ME
*GG*
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That's all you take is 1000 IUs of Vitamin D? Are you sensitive to this? I take 5000 IUs of Vitamin D now that it is summer, down from 8000 IUs in the winter. My Vitamin D level was around 70 which is the therapeutic dose.
I have been on 4.5mg of LDN for a few months now, but am skipping a day to stretch until my next Drs appt. I want to get the 50mg tablets and make it myself and save some money! I pay $25 every month, which is not a lot, but this combined with all my other medical expenses, it adds up over a year.
Food for thought: I was just thinking lately that perhaps LDN is the reason that my digestion has gotten better and not the Probiotics? Any thoughts anyone? Similar experience?
Hi ggingues
The reason I take 1000iu Vitamin D is because when I spoke to Stephen Dickson he recommended 1000-1200iu a day if I hadn't been tested. I can't get Vitamin D testing on the NHS, although I'll try again.
I always have a fear of overdosing on Vitamins as I am very sensitive to all meds & vitamins & so err on the cautious side!
That's a lot you are taking but as you say you have been tested and it shows you are low.
My only experience with LDN and my gut was it caused a lot of problems - awful stomach pains initially on 1.5mg and loss of appetite. So it shows with your gut improvement that we are all different. I take Probiotics & Prebiotics (Inulin).
If I find I can't get LDN prescribed I will go with making my own from 50mg tabs.
The reason I take 1000iu Vitamin D is because when I spoke to Stephen Dickson he recommended 1000-1200iu a day if I hadn't been tested. I can't get Vitamin D testing on the NHS, although I'll try again.
I always have a fear of overdosing on Vitamins as I am very sensitive to all meds & vitamins & so err on the cautious side!
That's a lot you are taking but as you say you have been tested and it shows you are low.
My only experience with LDN and my gut was it caused a lot of problems - awful stomach pains initially on 1.5mg and loss of appetite. So it shows with your gut improvement that we are all different. I take Probiotics & Prebiotics (Inulin).
If I find I can't get LDN prescribed I will go with making my own from 50mg tabs.