LDN questions my medical team can't/won't answer!

[Goldfrogs]

Hi All,

I have been on LDN for 3 weeks now, I am currently on 3mg, will increase to 4.5mg over the next 2 weeks.

I am in Ireland, my Pharmacist has told me that this is currently an "unlicensed" medication here, and I have had to jump through some hoops to get it.

My Rheumatologist prescribed this for Seronegative Arthritis pain that does not respond to regular Arthritis Treatments. I am 35 and have been suffering with pain in all joints after a 10yr remission, for the last 5 years now. They have no patient information leaflets on this medicine, and directed me to an online resource that is only about Naltrexone for substance abuse, so it is not very helpful to me.

My questions really are:

1.Does LDN have to be taken at night for maximum benefits?

I find the sleep disturbances/vivid dreams are getting worse, more sinister, and I am waking up miserable. I want to get the most out of this drug, but I do not like the sinister dreams!

2.Do I have to stop taking LDN before an anesthetic/sedation for a procedure? And if so, what happens if I ever need an emergency anesthetic?

I am scheduled for a colonoscopy in a weeks time, my Rheumatologist advised that it is not necessary to stop LDN in advance of this, the GI specialist advised I should stop 2 days prior, and I have read online that anesthetic administered while on LDN can lead to instant withdrawal symptoms which can put the body into shock. I am very confused on this.

3.Is it DANGEROUS to take Opiate Painkillers and LDN?

I have tramadol which I really need to take sometimes for severe pain. I currently take LDN at night approx 9pm. Is it SAFE to Take one dose of 100mg Tramadol-instant release- the next day. The latest I would take it would be 3-4 hours before my LDN dose.

As much detail on this would be appreciated, ie. Why is it not safe etc. Are there decent painkiller alternatives? NSAIDS, or paracetemol do not cut it.

4. Alcohol and LDN.

I do not drink very often, but when I do I usually drink to get drunk! ie. more than a bottle of wine. Is this DANGEROUS while on LDN. Should I skip my nightly dose if I am DRUNK going to bed?

I know that drinking in excess is never a fabulous idea, but it is a reality, and any information here would be appreciated, I am scared to touch a drink at the moment.

I am aware that LDN coats opiate receptors all over the body, including the brain, I do not want to mess with these if it is unsafe.

5.Is LDN classed as a painkiller?

A Rheumatologist repeatedly described this treatment as both an opiod antagonist and a Painkiller. From what I have read these descriptions seem to be conflicting.

I have read extensively on how LDN works to promote immune supporting endorphin's and suppress TNF response, this does not sound like a PAINKILLER to me, even though the resulting response is a reduction in pain. Again, I am confused on this, and currently do not trust this young Rheumatologists knowledge of the drug (not the original prescriber)

Thank you very much for reading these questions, I am hopeful that LDN could be a great drug, with little side effects, but these questions really are burning for me, and maybe the lack of concrete information I have received thus far is contributing to my wacky sleep disturbances!!

Thanks again,

Ellen

[Naturegirl]

Hi Ellen,

Those are a lot of questions. The bad vivid dreams will subside and stop. I personally do think it should be taken at night for optimal results. It shuts down your feel good receptors while you sleep and upon waking your systems works like hell to increase this - not an activity you want to experience during the day - like feeling low or depressed. Having said that many people do take it in the morning without any problems. I take 4.5mg at night and it certainly helps me with sleeping as well.

I do drink with LDN, but do not get drunk easily - that is because of the Naltrexone. I drink so that I can sleep better and I need to relax at night. Life is really very shitty with fibro. I still work full time running my own business and stress does get to me.

I have had many operations while taking LDN without any problems. I have been taking it for approximately 6 to 7 years.

LDN also prevents many other autoimmune illnesses as well as cancer and surely we do not want another illness on top of fibro.

Other people have said that it helps them with the pain - I was recently without it for a week and my pain level did increase, so it helps with the pain.

I take 2 Tramacet most days at 5 am and I cope with that for the day. I take the LDN at 7 pm, as I go to sleep at 8 pm. My day starts at 4.30 am. Tramadol is not an opiod - I think - and therefore does not interfer with LDN. For safety sake and effectiveness I would say leave 6 hours after taking Tramadol before taking the LDN.

Have you been on the LDN Research website? A lot of information is there. If you need any more info let me know.

I live in Africa Namibia and have had fibro for 35 years sic.

Kindest regards,

Gisela

[aredtigress Administrator]

Ellen,

I'm a volunteer with the LDN Trust and will try to answer your questions. Seronegative Arthritis is not listed on the Trust's list of conditions that respond to LDN, but that doesn't mean it won't help. Here's a link to a search of the website for "arthritis", you'll see a lot of RA - there are 4 pages to search thru to see if someone else has a similar form of arthritis.

Questions

1) Taking LDN at night is optimal, however many patients have seen good results switching to morning dosing when the night time disturbances don't subside. It can take a couple of weeks for that to happen. "From Pharmacist Suzy Cohen: "Melatonin-For many night-time thrashers, it’s a question of how much melatonin you secrete from your pineal gland. Melatonin production can be augmented if you supplement, because the pills (or sublingual sprays) get absorbed into your bloodstream and trigger the same sleep reaction as if you had made the hormone yourself. Fluoride can harm your pineal gland, which is supposed to make melatonin. For some, melatonin supplements are highly effective. For others, it must be combined with glycine, hops, valerian root or kava. I always suggest low dosages, about 0.2 to 0.3 mg per night, but you will find many supplements containing more. Be very careful with yourself, this is a hormone. Too much melatonin and you will suppress cortisol to the point that you feel bad getting up every morning (when cortisol is supposed to be peaking). That said, melatonin has a widespread (wonderful) effect on the immune system and specifically awesome for people with auto-immune disorders and chronic infections."

2 & 3) If you know about a surgery or procedure that will be using opiate based medications, our advice is to stop 4-7 days prior. If your doctor isn't sure about the medications, get the name and talk to your pharmacist. You can stop with no weaning, and begin again right after surgery - IF you not taking opiate pain medication afterwards. In case of emergency: An opiate pain medication taken after LDN is most likely rendered ineffective (or less effective) - and LDN taken after a opiate pain medication could result in withdrawal symptoms. Some patients include LDN on their wallet emergency cards. There can be some confusion between full dose naltrexone and LDN with medical professionals who are unaware of LDN.

Tramadol is acceptable to many doctors. From retired pharmacist Skip Lorenz, " Patients who must take pain medication consider Tramadol, which is not an opiate, but works on similar receptors. The only problem can be with the amount of Tramadol you take over a period of a day. Large amounts - that is, over 300 mg per day - have been reported to be problematic, but to my knowledge, lower doses (50 mg taken two or three time a day) have not presented any problems for patients while they are on LDN.

(He also recommends fast release Tramadol - not SL - slow release or EL - extended release.

4) We all respond differently to alcohol while taking LDN. Some see no difference at all, some don't get drunk as they do normally, some get rip roaring drunk on two drinks. The last was me for the first 2 years, now I can drink as much as I want and regulate my tipsy-ness. Test it out at home first

5) LDN is not a true painkiller. It is much closer to an anti-imflammatory in nature. If your pain is due to inflammation it should help, but it could take time. I have Fibromyalgia and didn't experience pain relief for the first 4 months. At 4 months one week I could feel a difference, and my gout, arthritis, IBS and TMJ all have benefited.

Hope I've helped!! I'm happy to answer any other questions, or talk further about the ones you've asked.

Michelle