• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Advice for going off of low-dose naltrexone?

LaurelW

Senior Member
Messages
650
Location
Utah
I've been on LDN for longer than five years (not sure exactly) and am not sure if it's doing me any good. It's pricey, since my insurance doesn't pay for it. I want to try going off of it, but don't know if I need to taper or can just quit cold turkey. It took me a number of months to go on it, slowly titrating up the dose, because it gave me insomnia if I went too fast.

Do any of you have experience doing this? What would you recommend? Thanks so much.
 

Rufous McKinney

Senior Member
Messages
13,489
What would you recommend? Thanks so much.

I run out of LDN periodically. If my supply is getting low, I'll take it every other day or every few days.

After about two weeks of no LDN- the yucky symptoms start to return. They subside again when I get back on it.

I guess I am saying I dont experience any noticeable withdrawals or issues with not having it for..I think 20-30 days was the longest I ran out.

It was costing me around $30/month....my insurer won't pay for it either, altho I never filed an appeal.
 

Wishful

Senior Member
Messages
5,957
Location
Alberta
FWIW, I was on LDN for a couple of years, and at one point I noticed the aches didn't reappear when I forgot a dose, so I simply stopped. No adverse effects. Of course, LDN--and every other treatment--works differently for different individuals, so it's up to you whether you want to taper off or simply stop.
 

Wayne

Senior Member
Messages
4,435
Location
Ashland, Oregon
Do any of you have experience doing this? What would you recommend? Thanks so much.
Hi @LaurelW -- I'd say the good news is LDN is "low dose", so I'm guessing any actual withdrawal symptoms would likely be minor (just a guess). That said, I've been thinking recently that high dose Vitamin D could give many of the benefits that people get from LDN, as their actions are similar in some ways. So here's "another guess". I think it's possible higher doses of Vitamin D "might" help ameliorate any withdrawal symptoms you may experience.

BTW, I've come to believe most of the "warnings" about too much Vit. D are way overblown. These days, many health practitioner are getting great results for many of their patients with various immune system challenges by treating them with anywhere from 10,000 to 100,000 IUs daily (and even more in some cases). For perspective, the human body can produce as much as 20,000 IUs in about 30 minutes of sunshine. Compare that to the the U.S. government MDR of 600 IUs daily. I'll side with cutting edge health care practitioners on this one.
 

Gondwanaland

Senior Member
Messages
5,100
I stopped LDN cold turkey with no issues at all. Of course I lost the additional energy it gave me.
Stopping turmeric cold turkey was really really hard, with depression, pain and overwhelming tiredness.
 

Sushi

Moderation Resource Albuquerque
Messages
19,940
Location
Albuquerque
It's pricey, since my insurance doesn't pay for it.
I ask my doc to prescribe 50 mg tablets which are very cheap and covered by most insurance. Then I measure 50 ml of distilled water into a dark glass bottle, pop in one 50 mg tablet, let it dissolve and then store it in the fridge and measure out my 4 mg dose with a liquid medicine syringe from the pharmacy -- 4 mg = 4 ml. I used to get it compounded and I don't notice any difference in effect from compounding it myself--except the price and the bitter taste! Many people take their LDN this way.
 

Gondwanaland

Senior Member
Messages
5,100
Hi @Gondwanaland -- I'm curious, why did you quit turmeric? It's always sounded pretty helpful (and benign) to me. I sometimes get frustrated with myself for not taking it more often.
It is a potent 5α-reductase inhibitor and tanked my testosterone and raised my total cholesterol to 356 mg/dL. I even had fat accumulation under the skin at one side of my face, close to the ear.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,176
Location
australia (brisbane)
I've been on LDN for longer than five years (not sure exactly) and am not sure if it's doing me any good. It's pricey, since my insurance doesn't pay for it. I want to try going off of it, but don't know if I need to taper or can just quit cold turkey. It took me a number of months to go on it, slowly titrating up the dose, because it gave me insomnia if I went too fast.

Do any of you have experience doing this? What would you recommend? Thanks so much.

If you're not sure it's helping, going off for a spell and back on again can give you a guide to how much its helping.

If or when you do, I think others will be interested in your conclusion 👍
 
Back