Experiences with Low Dose Naltrexone

[JML]

How are others obtaining their prescriptions?

Hi babl--I go through my regular FM doctor to get my Rx for LDN, so it does not cost any more than my regular visit. I use a local compounding pharmacy. Unfortunately my insurance does not cover it.

[Tincup]

Four hours before bed sounds a little early. My concern is that if you take it so many hours before bed, you may get that burst of energy in the middle of the night- not good. Use your own judgement and tweak with your experience. I belong to a private Facebook group comprised of folks using LDN where I can check in with other users about timing, symptoms, etc. You may want to consider joining.

She just wanted the 4 hours before bed initially. She told me that the med blocks opioid receptors but this effect only lasts about 3-4 hours. I think she was wanting this to happen before bed, in the beginning. Then if I don't get a big burst of energy, move taking it to around bedtime. It also sounds like a lot of this is very individual.

I would be interested the FB group if you PM me the info. Thanks!

[babl]

Thank you Tincup and JML for the information on obtaining LDN. I found a nearby naturopath who may prescribe it. I have an appointment to see her tomorrow. Fingers crossed that I won't be required to do a bunch of expensive out-of-pocket blood tests, etc, for it. I've already spent so much this year on so many different tests. I'll bring along my documents and test results and hope that will help.

Julie -- I'd also be interested in joining up with the Facebook group! Sometimes those groups can be so helpful for things like this. Thank you!

[Tincup]

Home compounding is described in this article: https://www.practiceupdate.com/content/ ... uice/82104 Get a script for the 50 mg Naltrexone tablets. In Europe, they are sold in 28 or 30 tablets at a time, film coated (which is good, so they won't oxidize and go bad). To compound take crush 10 tablets (with a mortar and pestle and dissolve in 500 mL of distilled water. Then you will have a 1 mg/mL solution. You can dispense in a dropper. Will keep in the fridge for 90 days. If you are dosing 4.5 mg day. then the 500 mg will last 111 days (i.e. longer than 90). If you compounded 8 tablets in 400 mL of water, you'd get a 90 day supply of 4.4 mg/mL LDN. In Europe, it is about $170 for 30 tablets or $5.66/tablet. This would work out to about $15/month for the med. If you have a cooperative doctor, this should be able to be filled at any pharmacy.

[circular]

Not sure if this has been mentioned in this thread, but a potentially important comment was made at Medscape about being on LDN in the event of injury or surgery that might require opioids. Could pose problems?

https://www.medscape.com/viewarticle/894020

I haven’t ruled out ever trying LDN, but I’m not sure it’s what I need at this juncture, and I’m still concerned about the issue that once on it you can basically be “resistant” to opioids if you need them for surgery or are an accident that causes severe pain. Julie mentioned that she made do in a bad situation, but alternatives to opioids aren’t always going to work.

Am I the only one here worried about this?

Here’s another link about this https://www.google.com/amp/s/edsinfo.wo ... exone/amp/

[Tincup]

Not sure if this has been mentioned in this thread, but a potentially important comment was made at Medscape about being on LDN in the event of injury or surgery that might require opioids. Could pose problems?

https://www.medscape.com/viewarticle/894020

I haven’t ruled out ever trying LDN, but I’m not sure it’s what I need at this juncture, and I’m still concerned about the issue that once on it you can basically be “resistant” to opioids if you need them for surgery or are an accident that causes severe pain. Julie mentioned that she made do in a bad situation, but alternatives to opioids aren’t always going to work.

Am I the only one here worried about this?

Here’s another link about this https://www.google.com/amp/s/edsinfo.wo ... exone/amp/

From Dr. Handler's patient information sheet:

"If I need to receive opiate painkillers in an emergency situation, what do I do with LDN?
LDN clears your system within 3-4 hours. If you are in a situation where you must take opioids, don’t take LDN during that time. The action of non-opiate painkillers is not affected by LDN. You should make your doctor or any ER staff aware of when you last used LDN.

[circular]

...

(Used ellipses because it’s a pain and next to impossible to fine tune quotes on an iPhone.)

Thanks Tincup (and love your handle by the way ... brings back good memories of crystal pure lake water in the far north lo those many years ago

It’s the period of time I could be in severe pain before a transition to opioids works that concerns me. I can see for many with chronic health issues LDN could be life changing, so I support it, but I think Julie’s earlier suggestion that they should probably have a medical ID is well taken. We’re not necessarily conscious, and healthcare providers don’t necessarily know what’s in your medical record, in an emergency. This seems like one of those exceptions that can lead to ‘it’ll never happen to me’ complacency.

[Tincup]

It’s the period of time I could be in severe pain before a transition to opioids works that concerns me. I can see for many with chronic health issues LDN could be life changing, so I support it, but I think Julie’s earlier suggestion that they should probably have a medical ID is well taken. We’re not necessarily conscious, and healthcare providers don’t necessarily know what’s in your medical record, in an emergency. This seems like one of those exceptions that can lead to ‘it’ll never happen to me’ complacency.

Here is how I look at this for myself. I haven't taken an opioid since September 1974, when I broke my fibula near my ankle in a collegiate football practice. If it works out that I can take the LDN before bed, then my risk of having an issue requiring an opioid painkiller is very small - I'd need to trip and fall on my way to bed. If it turns out I need to take the med in the morning, I may think about taking it at work, rather than before I drive on my commute. In any case, I'm willing to risk being in pain for 4 hours or less to get the potential benefits of LDN. I look at the risk as very asymmetric, which is something I strongly consider before trying any intervention. If something did happen where I was in pain for that amount of time, I'd know that is the bargain I'd made and just suffer. I've been through the pain of two kidney stones ~20 years ago, falls skiing at 40 and 55 MPH, rock climbing falls & etc that were all quite painful without resorting to exogenous pain management so I'll just accept it if it happens.

[circular]

Here is how I look at this for myself. I haven't taken an opioid since September 1974, when I broke my fibula near my ankle in a collegiate football practice. If it works out that I can take the LDN before bed, then my risk of having an issue requiring an opioid painkiller is very small - I'd need to trip and fall on my way to bed. If it turns out I need to take the med in the morning, I may think about taking it at work, rather than before I drive on my commute. In any case, I'm willing to risk being in pain for 4 hours or less to get the potential benefits of LDN. I look at the risk as very asymmetric, which is something I strongly consider before trying any intervention. If something did happen where I was in pain for that amount of time, I'd know that is the bargain I'd made and just suffer. I've been through the pain of two kidney stones ~20 years ago, falls skiing at 40 and 55 MPH, rock climbing falls & etc that were all quite painful without resorting to exogenous pain management so I'll just accept it if it happens.

Sounds reasonable. It's true I don't have any experience with severe pain, and episodes of "bad" pain have been short lived, so maybe I fear severe pain more than I should. I guess I avoided an experience of severe pain when I had surgery because I had all those pain controls at work, but it was schedule surgery, not emergency surgery where waiting could be detrimental to outcome of the surgery.

It was my takeaway a long time ago that there's also individual variability in pain tolerance, governed by genetics and biology as well as whatever psychosocial factors may be at play. So for some, who may feel they're not as tolerant of pain as you are, the more important question may be that of risk tolerance at whatever asymmetry one perceives the risk to be for their own self. I'm currently judging my health not poor enough to take the risk.

[Daymoo]

I am jumping in here late... maybe I missed it but I don’t see the link to
The Facebook group, and I searched on Facebook for it with no luck.

I have gradually raised my dose from .25 to 1 mg. The night of the first .75 mg dose, I had tremors and sweats that were mild— I thought it was because I was getting my period and was kinda low on hormones. Last night I raised it to 1 mg and had soaking sweats (very unusual for
me, as I’m not in menopause) and some tremors (an occasional stress symptom I’ve experienced since reducing my dose of Mirtazipine two years ago— I am now down to 3 mg.) Today I have internal vibrations in my legs— also a recurrent stress symptom since reducing the Mirtazipine. I have Hashimotos, and I did have Lyme and coinfections but no one’s sure if I have them anymore. We’re all pretty sure I have intestinal parasites and moderate hypo/hyperprofusion in a few areas of my brain from old injuries.

So far my FM pain has been worse overall since starting LDN. The one improvement that keeps me going is gut motility.

I read the Pheonix Rising posts and see that some people don’t tolerate this drug.

I suppose I’m not willing to give up yet—so much promise!

But does anyone here know whether or not the stimulation of the thyroid gland could happen within (four) hours of taking LDN? And does anyone have a link to the FB group? Curious why people with Lyme would not tolerate it—maybe my response is diagnostic...