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jm815
07-11-2006, 05:16 PM
Hi. My name is John. I haven't seen this topic discussed here, although
I'm new to this forum and may be mistaken.

Has anyone here heard of or had experience with a treatment called Low Dose Naltrexone, or LDN?

I haven't heard much info on it, other than a website run by a few doctors who claim to have had success with it in treating a variety of auto-immune disorders. At 50mg levels, this drug is used for heroin detox, as it is an opiate/opiod blocker. At a much lower dose (3.5-5mg) it is purported to stimulate production of endorphines and stabilize the immune system.

At first glance, it has some trademarks of a "too good to be true" treatment: no side effects (at this dosage), mostly anecdotal evidence, high success rate. I wanted to find out more about it because the person who told me about it is a well-respected professional whose advice I trust.

I'm hoping for some feedback, thoughts, and opinions from anyone who has tried this treatment, knows someone who has tried it, or is well informed about various treatments for SLE. I was diagnosed with SLE about a month ago, and although I have done some research on my own, I feel relatively ignorant about treatments, and about SLE in general.

Thanks in advance for anyone who takes the time to read this and/or reply.

Saysusie
07-14-2006, 12:36 PM
Low dose naltrexone was FDA approved, as you said, to use in detoxification of drug use. It was found to have marked improvement in persons suffereing from Chron's Disease. The results of the studies showed that 89 percent of participants showed an improvement with therapy, while 67 percent achieved remission of symptoms. The only side effect to treatment was sleep disturbance in some patients.
They then began to study the chemical and molecular mechanisms involved in suppression of inflammatory responses in animans when given low doses of naltrexone. Dr Bernard Bihari began administering the drug to patients with MS and HIV. At this time Naltrexone is only ‘officially’ approved as a treatment for alcohol or drug dependence, at doses much higher (around 50mg) than the very low doses (up to 4.5mg) prescribed for the management of MS or other diseases, such as Lupus.
At high doses, it blocks the effect of heroin or opium. At low doses naltrexone inhibits the action of endogenous opioid hormones (eg, beta-endorphin and metenkephalin). Research in the last 20 years has shown that most immune cells have receptors for these opioid hormones that are believed to help "orchestrate" the immune system.

Here is a website I found that has information written by people who have actually used Naltrexone: http://www.friendswithms.com/low_dose_naltrexone.htm

I hope that it is helpful to you

Peace and Blessings
Saysusie

stjames13
07-15-2006, 01:08 PM
8)
Having worked as a CSAC (certified substance abuse counselor) I have never heard of NALTREXONE used IN DETOX....usually we used CLONODINE as it lowers the Blood pressure and thus makes the symptoms feel less painfull than it really is.....

We used NALTREXONE as an AFTER CARE product. If someone on NALTREXONE shoots, snort or tries to get high on ANY OPIOD they WILL NOT FEEL IT.....When it first came out it was ONLY available as a pill.

From what I heard last is that it is now an IMPLANTABLE MEDICATION thus this way the recovering addict can not go off it for 3 days get high and go back on it.....either way the OPIOD use still showed up in their urine.

SO how is it used for LUPUS?????...THANKS I like keeping any and all possible remedies that are used to fight LUPUS>
DO they use it for just SLE or DISCOID as well???

THANKS,
St JAMES 8)

jm815
07-16-2006, 04:27 PM
Here's my understanding of the treatment: A low dose of naltrexone is taken at bedtime, which is shortly before peak endorphin production. The naltrexone prevents endorphins from attaching to receptors in the brain, and the body responds by making more endorphins to compensate. The elevated levels apparently work to stabilize or orchestrate (as Saysusie put it) the immune system. I don't know much about how exactly this last part works.

I've seen more references to treatment of MS, Crohn's and HIV than I've seen about treatment of lupus. The lupus references I've seen have only mentioned SLE, not discoid lupus.

Thanks for your responses. As I mentioned, I don't know a lot about lupus treatments. I took Percocet for several months for pain relief, and it helped, but I wasn't comfortable with it as a long-term option. I've heard a little about corticosteroids, and they seem to have drawbacks. I've benefited from eliminating cafeine and lowering my sugar intake. I'm looking into acupuncture, and I'll continue to try to find out more about naltrexone. If/when I learn more, I'll pass it along on this message board.

John

jm815
07-16-2006, 04:42 PM
I also posted a link to a website over in the links forum, which may provide more info to those who are interested.

stjames13
07-17-2006, 12:22 PM
8)
THANKS JM.....I got the link and will read it completely when time permits

I doubt I can use NALTREXONE as I am on MORPHINE for my broken back and neck.

I like to know about all and any new info about LUPUS so I can help DOCTORS and those who come here with no knowledge about anything.

I see you are from JERSEY....I lived in NEW BRUNSWICK for awhile..are ya near there????

THANKS FOR THE LINK
St JAMES 8)

jm815
07-17-2006, 03:39 PM
I'm about 20 minutes away, up in Linden. I lived in New Brunswick for a few years, first in college, then afterward as well. Are you still in NJ?

Yes, morphine would seem to eliminate naltrexone as an option. Sorry to hear about your neck and back. That must be a real challenge to deal with.

Hopefully I'll have more info to pass on before too long.

John

Sheryl
07-17-2006, 05:19 PM
I was interested in your post, John, so I did a little more Googling. It seems that LDN is also being tried out (not official trials yet) for people with MS who are getting some good results in the reduction of exacerbations.

I will be seeing my neurologist tomorrow, who treats many MS patients, so she may be familiar with it. I will ask her what she knows about using it for Lupus.

Updated 7-19: I did ask the neurologist, and she said she had never heard of it being used for lupus, only MS. She wouldn't consider it for lupus, and is not yet using it for MS, but is following it. She also said that you must be very careful never to touch alcohol as it is the same drug used for preventing alcoholics from relapsing.

That's all we discussed.