Low dose Naltrexone

[Sushi]

Got it- thanks!! I see, so probably those with problems that lingered any longer than three days were due to viral/infectious things that surfaced as a result of the LDN, but not the LDN itself.

Probably, as LDN can affect the way the immune system functions. One friend ended up in the hospital from taking too large a dose at first. He had been exposed to a cold and his immune system responded and he got a very high fever.

Sushi

 

[Tiger Lily 813]

Yes I'm really grateful for this thread to understand the power of it for those of us with these types of illnesses; now I know to be extremely cautious!!

 

[ellenelle]

I've been sick for over 36 years, steadily becoming progressively worse. I fall into the very sensitive category and, as 99% of the treatments I've tried have made me worse – often permanently – I am now very wary of trying anything new at all. But having heard enough positive about LDN, I decided to risk it, staying cautious about building up really, really slowly. So, without too much trouble, I built up to 1 mg daily over six months. I got a subtle but very welcome improvement in energy almost from the beginning and that never really increased as I increased the dosage, but I hoped to see some pain reduction and I kept increasing. My current dosage is 1.2 mg. I have taken it in the morning from the beginning, because whatever sleep I do get is just too precious to risk messing with.

Somewhere in the last month I noticed I was feeling depressed and a new kind of sluggish. I attributed this to other things, but finally have come to suspect it is related to LDN. A Google search for "low-dose naltrexone depression" led me to parts of this thread. I haven't got anywhere near the energy to read it all, but I'm getting the impression that my latest suspicions are correct.

I would appreciate any advice on how to proceed. I skipped my dose this morning. I was hoping for some immediate confirmation in some improvement, but haven't gotten any.

My questions are:
Should I stop entirely? If so, for how long? Are there risks associated with stopping cold turkey? It took me so long to build up, I'm reluctant to lose that tolerance.

Or should I not stop but drop the dose? How low?

What are the chances I won't recover to my former baseline? Given my history, this is not an unreasonable worry.

thanks!

 

[Tiger Lily 813]

@ellenelle - what are the specifics of your illness that you have been taking this for?

 

[ellenelle]

The usual: general extreme fatigue, weakness, fibromyalgia, POTS, post exertional malaise and, various cardiac symptoms, etc.

 

[Tiger Lily 813]

I am no expert as I haven't taken it, but I did just read the whole thread.
The consensus seems to be that if you are sad there is too much in your system somehow at the time. Check pgs 40-45 of this thread for more detail on that.
When I asked about your illness I meant if you had any infections, viruses, diseases or other causative factors. I'm glad you were improving for some time, and I hope you get back there really soon!!

 

[ellenelle]

Oh, I definitely have lots of viral activity. Didn't know what you meant. But I have heard a couple of reports of people whose depression didn't disappear for quite a while after stopping, and that's what is worrying me the most.

 

[Sushi]

@ellenelle

Some who have had depressed feelings on LDN discovered that they were not clearing it as fast as usual and did much better by taking it only every 2 or 3 days. For most it blocks your opiate receptors for just a few hours, so if you take it at bedtime you sleep through it.

But, for some, the receptors seem to be blocked longer. So maybe before stopping it entirely, try spacing out your doses. And, I have not heard of anyone having a problem stopping it "cold turkey."

Sushi

 

[Tiger Lily 813]

Yes, that's what concerned me, but I think only one other person on here mentioned having been stuck with that symptom @xrayspex did you ever feel like the emotional problems from this went away eventually? I think the post I'm referring to was quite some time ago.

 

[maddietod]

I tried LDN starting last October at .5. I experimented off and on (I had to stop twice for surgery) until mid-February,with a top dose of 1.5. I had no problems stopping it.

At .5 my sleep changed - less wakings but shorter time overall. That was an improvement over what I've got now. But when I increased, I got sad or angry, both unusual for me. The day I yelled at the microwave was my last day on LDN.

I haven't started up again after the second surgery; I haven't talked with my doctor about how useful it is if I just stay at .5. I have read the information about some people clearing LDN slowly, but until recently it's felt much too complicated to test increasing the dose while spacing it out.

 

[Marlène]

If you feel depressed on LDN, my 50 cents:

- you don't clear it quickly enough
- your exhausted adrenals are working too hard and need some extra support
- your immune system is having a hard time => sickness behavior
- you were on antidepressants before and your chemistry is still too messed up to deal with the new boost of neurotransmitters
- it's not what you need

 

[xrayspex]

@Tiger Lily 813 --I had a rough time going onto it and eventually found some sort of homeostasis that I wasnt comfortable with, was crabby too much and then started feeling it was blocking endorphins all the time, became sensitive to foods etc and felt it blocked happiness etc I went off it and can't recall how long it took to feel better but it subsided but honestly I do feel havent been the same since and that was 2008

I was on it like 6 mos though and did do stuff like smaller doses and not every day....but i have tough time with all chemicals

 

[Tiger Lily 813]

: (
I haven't yet felt any emotional involvement from it (knock on wood)- Scared though. All it seems to do for me is enhance sleep a bit. Been on it just under a month at steady .25 ml/night and breaks on the wkds.

 

[EtherSpin]

I could really use some input here guys , without a history of it I recently had a series of extreme depressive episodes and attempted to admit myself to hospital ward in April, got prozac and seroquel combo from my CFS Doc which I thought was working but may have largely been due to me stopping all negative triggers (social networking,news broadcasts,violent tv shows etc) - I had another big dip a week ago and on wednesday another CFS specific doc at my clinic noted that of the three times Ive had depression & dissociation it has coincided with a virus and two times triggered extreme vertigo (vestibular neuronitis) -

to summarise, he put me on 4.5mg of Naltrexone taken 9pm at night as he believes its all virally triggered neuro inflammation. he did a quick sheet of notes from the appointment which mentioned that common doses were 1.5-4.5mg but that mine was to be 4.5 with no mention of initially scaling up, splitting tablets etc - the tablets arrived in the post just now and they are 4.5 with the same instruction, take 4.5mg at 9pm each night

any thoughts?

 

[Sushi]

I
to summarise, he put me on 4.5mg of Naltrexone taken 9pm at night as he believes its all virally triggered neuro inflammation. he did a quick sheet of notes from the appointment which mentioned that common doses were 1.5-4.5mg but that mine was to be 4.5 with no mention of initially scaling up, splitting tablets etc - the tablets arrived in the post just now and they are 4.5 with the same instruction, take 4.5mg at 9pm each night

any thoughts?

Yes, I definitely have thoughts. I worked up on LDN from 1.5 to 4.5 over 4 months. I had symptoms each time I raised the dose until I got to 3 mg. I know someone else who ended up in the hospital by jumping from 1.5 mg to 3 mg--he had a fever of 104.

It is very rare for an ME/CFS patient to be able to tolerate a dose of 4.5 mg initially and the side effects can be pretty bad. You could cut up or crush the tablets and divide them and put the dose you want in water. My thought is that, if it were me, I'd play it safe and start low.

Keep up posted,
Sushi

 

[heapsreal]

I could really use some input here guys , without a history of it I recently had a series of extreme depressive episodes and attempted to admit myself to hospital ward in April, got prozac and seroquel combo from my CFS Doc which I thought was working but may have largely been due to me stopping all negative triggers (social networking,news broadcasts,violent tv shows etc) - I had another big dip a week ago and on wednesday another CFS specific doc at my clinic noted that of the three times Ive had depression & dissociation it has coincided with a virus and two times triggered extreme vertigo (vestibular neuronitis) -

to summarise, he put me on 4.5mg of Naltrexone taken 9pm at night as he believes its all virally triggered neuro inflammation. he did a quick sheet of notes from the appointment which mentioned that common doses were 1.5-4.5mg but that mine was to be 4.5 with no mention of initially scaling up, splitting tablets etc - the tablets arrived in the post just now and they are 4.5 with the same instruction, take 4.5mg at 9pm each night

any thoughts?

Have they given you any idea on which virus is the issue??
Look also into other immune mods like immunovir which also help increase immune function and arent viral specific like most antiviral meds. If its ebv or cmv then look at jumping on an antiviral??

 

[EtherSpin]

I went ok last night on the full dose (which was paired with 1 25mg seroquel at 9pm as I got ready for bed)
heapsreal - no particular virus, he just thinks its with generally increased immune load I think.
I'm guessing the jump to the 4.5 dose was because I am already experiencing (independent of the LDN!) depression,dissociation etc - I spoke about it with some other patients from the same doc and there are several who began and stayed on that dose, just a couple who scaled it back after some side effects

thank you for the input, I will be watching it very closely!

 

[EtherSpin]

I'm wondering has anyone else been put on LDN (on the assumption that you have M.E. ) for depression or similar symptoms that could be from neuro inflammation ? I'd love to hear from anyone for whom this is the case

EDIT - update , I've had two changes since being on the LDN (maybe 11 days in or so) - my normally elevated temperature (average about 37.2 C) is now around 36.2 and I can tolerate warm clothing, I am actually wearing jumpers to bed on the cold nights ,very out of character.
each morning I am still drowsy (the pleasant kind) when I wake and could sleep till 9 am instead of 7 . will see if this is rejuvenative sleep in time

 

[jackass]

When I was using LDN a couple of years ago it messed with my sleep too much so I had to quit it.
I'm considering to start it again but to take it in the morning time this time. May taking it at 4 - 5 am work, or would it be too late?

 

[Marlène]

@jackass

have you tried melatonine to sleep as well?