LDN dosing for fibromyalgia and ME/CFS

Hello and thanks for posting your extensive report on LDN. I'm about to approach our PCP to ask for a prescription for my husband and have been gathering supporting documentation. I'd like to prepare my own solution of ground up 50mg tablets in 50 ml of sterile water so that titrating up or down can be easily achieved . If he won't go along with that idea [which apparently others have used] we will have to use a compounding pharmacy. You say that you will provide the name of a reputable one. For starters do you recommend a Rx for 0.5 mg and then take multiple doses per day when you want to move up to 1 and 1.5? I'm just not sure what format to request our doctor to write the prescription for.
I'm a great believer in watching out for internet privacy. That said, I'd rather not give you my real email address for the info on the compounding pharmacy by posting my address on this public forum. If you don't want to post the pharmacy name, can you suggest a route which will respect your privacy and mine?

Thanks for being so helpful by sharing your experiences and the results of your searches for info.

Hi- Thanks so much, and I'm so happy to know it helped someone. Wading through chronic illness/pain can really wear me down, and it does lift my heart a bit to know there are others out there.

I completely agree about internet privacy; I try not to post many (if any) identifying characteristics, and I want to be respectful of small businesses, plus I didn't want to make it seem like I'm an advertiser for their pharmacy. There is a "private message" option on this; the alerts go to your email but the email is not visible to the person you're communicating with. But I thought about it, and in this case, I'm okay with posting the name of the pharmacy because it's a very large pharmacy.

The pharmacy is Care First Specialty Pharmacy in New Jersey: https://www.cfspharmacy.pharmacy/

They have the best price at least as compared to the compounding pharmacies in my area (I'm in a different state), they're very professional, shipping fees are low, and the team is very nice. You can easily ask to speak with a pharmacist or pharmacy tech if you have questions. The only down sides I've experienced is sometimes there can be a wait on hold (but I've never had a problem with the people who pick up the calls) and it can take them a few days to process a prescription or refill request, so I try to call in refills early, 2-3 weeks ahead if I'm worried about running out.

You can call them or other compounding pharmacies in your area to ask about options and pricing; I have found that compounding pharmacists are very approachable and happy to help with understanding all the different options. They're also very willing to talk with a physician if they have questions or don't have much experience with compounding pharmacies. Before I had my doctor send the RX, I actually called my neighborhood compounding pharmacy and talked to the pharmacist about the different formulations they offer, and he gave me information, tips, and pricing. He said he ends up talking to a lot of MDs and their nurses because many aren't familiar with how to write a compounded prescription.

I'm not a scientist or a pharmacist, but I'd be hesitant to make my own solution, for fear the concentration may not be correct. (That said, my sister is a scientist and she'd probably be able to do it!) A compounding pharmacy can create a solution for you, if that's important to you. My dad has a feeding tube, and when he first started, we used liquid solution. (But it tends to be more expensive than tablets, so we switched to tablets, which can be crushed and dissolved, then put through the feeding tube.) If you decide on a liquid formulation, your doctor will need to specify the dilution (i.e. 1 mg per mL, etc.)

Once you choose your formulation, the doctor needs to specify the quantity. Some pharmacies price per unit; others have a discount when you go up to a 90-day supply. For my own sanity, I just ask for a 90-day supply, now that I'm on a stable dose so I don't have to keep worrying about refills.

Because LDN is compounded, it's highly customizable, especially from this pharmacy. You could start with smaller tablets and later get a new prescription for a larger dose. Or they can make a liquid solution (or even a cream). For me, I started with 1 mg tablets to make it easier to titrate until I knew my dose (I was using a different pharmacy that had bigger tablets, so I was able to cut them in 4. If you end up using this pharmacy, their tablets are very small, so you may want to consider getting smaller tablets to start.)

They have the ability to make tablets as small as .5 mg, and my current dose is 6 mg. They make a 6 mg tablet for me. Capsules are customizable for any dose you want, but more expensive. I find their tablets easy to split because they're round, coated, and scored, which in my experience is less likely to get crushed.

Hopefully, your doctor will be amenable to writing the RX if they're not familiar with LDN. But just a head's up, I had to ask 3 different providers (neurologist, rheumatologist, physiatrist) and none were comfortable writing the prescription, though they'd heard of LDN. When I requested the LDN for my dad, his PA was skeptical...but we insisted, and she was willing to do some independent research before agreeing to prescribe it. Now, his neurologist handles the prescription, but he has more of an integrative medicine approach. There are some doctors who do telemedicine specifically to prescribe LDN; I've read some good things but there's a lot of uncertainty. I almost went that route for my dad, but thankfully didn't have to.

For me personally, I chose to start at .5 mg (eventually, I had to go down to .25 mg as I wrote about because of the side effects) because I have a medical condition that makes me very sensitive to medication. Others start with a higher dose, such as 1 or 1.5 mg. I think it depends on how risk averse you are to side effects. If you start at a higher dose and experience side effects, it's easy enough to back off and the effects tend to clear quickly because of the small dose and short half life. And you can reach your goal dose more quickly. But that just wouldn't have worked for my health condition.

I don't split the dose, only because any of the other research we'd seen recommended to dose it in the evening before bed, or if the person experiences side effects to take it in the morning. I don't think there'd be harm in trying it, but we just hadn't heard any reports of it.

Hope that helps!

What symptoms or illness prompted you to ask your Dr about LDN? Have you been taking it and, if so, what symptoms has it helped with? Also can you give some info on your starting and maintenance doses and if you had any side effects?

I have been a long hauler since April 2022. Because of Me/CFS, I started LD Naltrexone 1.5 in April and after a few weeks jumped to 3.0 and then shortly thereafter 4.5. That titration was too quick for me, I was very irritable , jittery and had worse insomnia. I backed off to 3.0 which I tolerated well. I found that I have to take it at 10:00 in the morning to avoid worsening my insomnia. Just last week I have added 4.5mg three times and 3.0mg four times and that seems to be helping me to have slightly more energy and not as jittery or irritable. It does however affect my short term memory (worse than usual) but my PEM crashes seem shorter duration.

I started at .5mg LDN for Fibro, after one day I had increased pain so dropped down to .125mg for four days. When I increased to .250mg, I had two nights of severe insomnia, so dropped back to .125 for two days, on the second night I again had bad insomnia, so I stopped taking it two days ago. My sleep is better but I also started taking an extra 50mg Trazodone the last two nights. I've had various degrees of insomnia for 18 months, so I'm not sure if the LDN is responsible or not. I'll start again at the .125 dose soon and see how it goes. I think it helped reduce my pain a bit, so hope I can keep taking it.

It’s always challenging trying to untangle the side effects; hoping you find a combination that works for you.

Are you taking the LDN in the evening or morning? I had to take it in the morning because I also felt over-energized in the beginning.

Originally around 11:30am, then switched to 9:00am. Today my Dr said the .125 and .250 doses were so low, he didn't think the LDN was responsible for my insomnia.

I started at .5mg LDN for Fibro, after one day I had increased pain so dropped down to .125mg for four days. When I increased to .250mg, I had two nights of severe insomnia, so dropped back to .125 for two days, on the second night I again had bad insomnia, so I stopped taking it two days ago. My sleep is better but I also started taking an extra 50mg Trazodone the last two nights. I've had various degrees of insomnia for 18 months, so I'm not sure if the LDN is responsible or not. I'll start again at the .125 dose soon and see how it goes. I think it helped reduce my pain a bit, so hope I can keep taking it.

HI,
I traveled to a specialist in Boston for SFN and he started me on LDN. I had researched it before that but my Primary Dr. didn't know much about it. Started with 1.5mg for 3 weeks, raised to 3.0 for 2 weeks and ending with 4.5 mg. It took a couple of months to kick in, but had a dramatic effect on mt CFS. I have a lot of pain, so for me, using it for Fibro is a waste.