Naltrexone

[carolynlp]

I recently tried low-dose Naltrexone for slightly over one month. Worst experience ever! The extreme bowel cramping that emerged immediately caused me to half the dose for one week until my tolerance was increased, but even then, it was a daily occurrence. I also experienced unsettling mental confusion in the 1st month in that I began having difficulty tracking conversations. That also mostly settled down, but nearing the start of month two, wild random dizziness kicked-in. We live in a house with stairs and I still drive, so this was untenable. I have since discontinued the Naltrexone and am slowly returning to normal. I found this drug to be scary and dangerous and want to encourage others to try it with caution.

There was no improvement in my energy level, but several sources indicate that this result does not typically occur until after 2 months on Naltrexone.

 

[stellaluna]

What dose did you take? Just out of curiosity. Some people are very sensitive to naltrexone

 

[Rufous McKinney]

I'm desperately seeking Naltrexone which has helped me out considerably. I had no side effects ever, from it. I started at 3.5 mgs and have stayed there and taken it probably for ten years.

There just can be such a huge range of reactions to these things. I'm sorry you had so many problems, @carolynlp . Sounds like this is not a good drug for you, unless some other variables were also at play. Sometimes its very hard to tease out what exactly caused unfortunate downslides.

Some folks are taking 0.1g. I'm at 3.5. My doctor suggested I go up to 4.5, I didn't change my dose.

I suspect trying to study this with standard testing will be hampered by these highly variable dosages, and extremely varied reactions. Too bad we can't figure this out.

 

[Wishful]

That's unfortunately typical for ME treatments: they work really well for some people, and are terrible for others, and have no significant effects for others, and there's no way to determine in advance which group you're in. LDN was wonderful for me.

 

[carolynlp]

What dose did you take? Just out of curiosity. Some people are very sensitive to naltrexone

4.5 mg

 

[Artemisia]

You might could try again with only 0.5 mg? 4.5 is high to start with

@Rufous McKinney can you not get it where you live?

 

[stellaluna]

4.5 mg

You started on that dose? Usually people start on much less. 0.5mg or even less than that.

 

[Rufous McKinney]

@Rufous McKinney can you not get it where you live?

Generally it's not here, but sometimes it might be. There is now a rumor it might exist in a pharmacy around the corner. That would be an odd Miracle and my daughter is heading back with this Rx to check (later).

 

[Rufous McKinney]

4.5 mg

I'd recommend trying it at a much lower dose. I did 3.5 and it was fine. Not sure why as most pills bother me alot.

 

[Wishful]

I'd recommend trying it at a much lower dose. I did 3.5 and it was fine.

LDN dosage can be tricky. For me, 2.0 mg had no effect, but 2.25 mg had full effect. No difference until around 6 mg where it stopped being as effective.

It also affects different symptoms in different people. For me, it was only an ME pain blocker, but really effective for that. No side effects either.

 

[cfs since 1998]

I started at 0.5mg and feel worse for two weeks every time I raise the dosage by 0.5mg. I'm at 1.5mg currently.

 

[Artemisia]

I started at 0.5mg and feel worse for two weeks every time I raise the dosage by 0.5mg. I'm at 1.5mg currently.

did you feel anything on 0.5 mg? i tried 0.5 mg for 2 days, taken first thing in morning, and had bad insomnia both nights.

 

[Rufous McKinney]

@Rufous McKinney can you not get it where you live?

My QUEST for Naltrexone:

1) Mark Cuban's company seems to carry Naltrexone 50 mg for $35. I doubt they will fill my Rx from Mexico. Millions of Americans are in Mexico and many prescriptions drugs cost far far less. But not so, Naltrexone. We could sure use some help since we. can't even use our insurance.

2) I now have an RX from the local neurologist. It seems we may have in fact located Naltrexone 50 mgs in a nearby pharmacy by total accident, It will cost me nearly $160. That is alot of money here.

3) nobody has ever heard of compounding here. It does not translate. I have no idea if I will succeed in cutting down my own Naltrexone. I will somehow have to.

 

[cfs since 1998]

did you feel anything on 0.5 mg? i tried 0.5 mg for 2 days, taken first thing in morning, and had bad insomnia both nights.

Yes, I had trouble sleeping/vivid dreams at first. It got better over time, but it took longer than 2 days.

 

[Rufous McKinney]

Mark Cuban's company seems to carry Naltrexone 50 mg for $35.

No they will not service anywhere other than the fifty states.

Milliions of Americans abroad, get even less health care. Too bad.

 

[JES]

Naltrexone is approved to be used in 50 mg dosage. It's a well studied drug and not particularly unsafe, especially at low dose. I react badly to a large number of drugs and supplements and had stomach reacting to LDN for a few weeks, but nothing major. There is always unfortunately the chance that drug or supplement X causes problem especially if you already have ME/CFS, which makes many of us more sensitive to drugs and supplements.

 

[kushami]

@carolynlp, I'm sorry you had those unpleasant effects. I have tried to start LDN perhaps four times since getting the prescription. My capsules were 1mg but that was too big a starting dose for me. GI disturbance and odd, exhausting dreams were my main side effects.

I did eventually manage to adjust to a 1mg dose after splitting the capsules first, and began to feel benefits after two weeks, but as the benefits in the daytime increased, the dreams became more and more upsetting, and I had to stop again. I think that it is for me, unfortunately.

If you can manage it, perhaps you could try again after a break at a much lower dose.

 

[Norwegianlad]

LDN dosage can be tricky. For me, 2.0 mg had no effect, but 2.25 mg had full effect. No difference until around 6 mg where it stopped being as effective.

It also affects different symptoms in different people. For me, it was only an ME pain blocker, but really effective for that. No side effects either.

Did you ever try going below 2mg again to see if it made the effect disappear again?

Some people don't get effect for months. So if someone were to try 0.5mg for 2 weeks, 1 mg the next 2 weeks, 1.5 mg for 2 weeks etc, then the effect only starting at a certain dose can also be LDN finally working for that person because of the time delay, and if he/she stayed on 0.5 mg for that whole same time it could have worked just as well as the higher dose.

 

[Wishful]

Did you ever try going below 2mg again to see if it made the effect disappear again?

No, >2 mg was ~100% effective at stopping the perceived muscle aches, so I didn't see a need to experiment further.

Some people don't get effect for months.

Different mechanism I suppose. It's possible that LDN at .1 mg for months might have an effect on my general ME symptoms, but I don't think that's any more likely than any other possible treatment. It's not feasible to test all possible treatments at all possible dosages and dosage increase regimes for weeks or months. Add in cofactors, and you could spend a lifetime testing just one possible treatment.

The treatments that worked for me generally showed a dramatic effect the next day, or even the same day. Is there an effective treatment I've ignored because I didn't have the proper dosage regime for long enough? Maybe, but there's no way to know which one I should have tried in what way. There's no way to know that LDN at a specific dosage regime is any more likely to work than donuts in a specific flavor rotation.

Donuts taste better than LDN.