Id say slow it way way down. Not all drs know how to prescribe this. A friends dr gave her 4.5mg pills from day one.
It takes months or more to feel anything, and you might not. BUT, if ypu stay on for a year (id say minimum. If you don't plan at least a year, don't go on it? This is a very very slow lifelong commitment - except coming off for surgery. I'm off right now as I'm on tramedol for preop pain and then ill be postop. Pain meds don't work on it.
But here's the thing you may not feel any difference being on it but then when you come off after 6 or 8 months you're paying may go through the roof. It's that kind of thing we don't feel a difference because it happens very very slowly and then all of a sudden you come off and you're like oh wow I guess it was helping.
I hipe this helps. I investigated LDN for over a year before I went on it. Then I specifically hunted for a doctor in town who prescribed it and knew how to prescribe it. It seems like now everybody just wants to put you on it but hasn't really done any research about how to do it correctly.
And what ends up happening is people like you end up with serious side effects and then stop taking it when if done right it very well could have helped you.
What I would do personally, just my thoughts. No scientific background to this just 8 years experience.
One week is not enough to start increasing your dose more like two months, by 0.5. If I were you and I was having those kinds of side effects I would go off of it totally for about 6 months and make sure symptoms are gone or that this caused them.
Then I would start at .5 for 2 weeks, 1mg for 2 weeks, up by .5 every week or two after that and stop for many months at 3.
Many doctors don't understand the shortest amount of time it's in your system is best. Therefore a lower dose gets out of your system faster.
You also want short acting not long acting! Not even all pharmacies know how to do this. And also a lot of pharmacies are getting powder/medication to capsulize from places in India that have bad powder.
Like with all generic meds, there are different levels of Naltrexone powder some of which is not medication at all and some of which is allowed to legally be 120% or more of your dosage?
I'm afraid right now you're set up for failure. It's too bad when medications not started correctly cuz I still give up on medications that could have been helpful.
And even for regular generic medication to just try a different manufacturer instead of saying the entire medication doesn't work. I've experienced this myself. Some Tramadol Works some doesn't work at all. And I have to find a pharmacy that gives out the manufacture that I need.
Good luck. Slow it way way down. Read much online.
Thank you so much, this is very helpful. I agree, many Drs just prescribe it now without knowing all the ins and outs from experienced patients. I'm willing to keep trying as I've heard great results can happen over time, as you said. I will dial it back and go slowly though. I have to be patient but hopefully, it's worth it. Plaquenil had the same effect on me, I didn't know it was working until I stopped taking it and after 3 months went by I realized I was back to a higher pain level without it. It's subtle so I do know how that goes and will now think about that with LDN. Thanks for this advice, it's more valuable than anything I've heard from Drs so far.
Do you have any specific research articles or sites that have been the most helpful? I've read a lot but clearly there's more out there. Again, many thanks. I hope you are well.