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!