Hi, people. I've spent the last couple hours reading about Low Dose Naltrexone. I am writing this as my opinion only. It was prompted by some critical remarks I made to "grannyhotwheels" Carol when she asked about something, an interchange that I regret terribly.
Here is a little history. Naltrexone was approved by the FDA in the mid-1980's to be used in treating opiate drug addiction. The dose approved for this was 50mg. The drug was found to satisfy drugs addict's need for the opiates. I included a link that talks about LDN's history and proponents. I just found this page (which is current) and have more reading to do. Here is a page you should all read:
Soemwhere along the line - and I haven't read these stories - some doctors began using it in other diseases, such as cancer, AIDS, Neurodegenerative disorders like ALzheimers, Parkinsons. and auto-immune disorders, in very low doses - 3mg to 4.5mg daily. Because this drug is already out and there is little financial incentive to study it, there have been few if any good scientific trials of it. There was one small (17 people) with Chrohns Disease and it was studied for 12 weeks. There was impressive subjective (Quality of life) improvments, but the Gold Standard for evaluating the true state of Chron's is endoscopy (looking up there with a scope) This was not done.
All the current data is made up of reports from people that it works in curing many forms of cancer, most autoimmune diseases, and it is being touted as treatment for autism. There is nothing definite from the traditional medical field. It is not mentioned by most of the MS sites. The "anecdotal" evidence (which is individual reports from patients or doctors) makes it sound fabulous.
I looked at sites which claim to be sites for the drug. One of them was last updated in 2000 and another in 2004. The forums, like ours, are made up of people with glowing reports that they have benefitted from the drug. I read several dozen posts. People helped others adjust their doses to deal with side effects. When people with MS complain of increased stiffness or spasms, they recommend that the people drop down to 3 mg. They have their drug formulated by "compounding pharmacies" and they have a list of the bad pharmacies who formulate it wrong.
The "recommendation" is that the ABC drugs (the interferons) interfere with LDN's effectiveness. So it is one or the other. They also say that when you start LDN you may have an aggravation of all the MS symptoms, but that you need to "ride it out" for 3 to 6 months and then you will feel better.
When I did look at the scientific articles about LDN they were mostly about the effect that LDN - as an opiate antagonist - has on the brain. They have documented release of endorphins with the very low dose. Endorphins are the body's own "feel good" hormones.
My concern with LDN is that we don't really know much about it. There are many doctors using it, for a variety of ailments from many different cancers, autoimmune diseases, autism, allergies and some others. The medical "establishment" is ignoring it or has looked at it and dismissed it. Now, I want to say that I have observed the medical establishment dismiss things that absolutely ended up true and continue to embrace harmful policies. In future posts on this thread I will discuss the three episodes that I have been aware of where traditional medicine failed to recognize really huge strides forward.
LDN has very vocal "boosters" as we have seen here on the forum. Some of these boosters are MD's. They believe that this miniscule dose of opiate-antagonist can reverse the body's entire immune response and cure devastating diseases.
I fear that LDN is another magic cure-all. I've seen dozens come and go. Do I believe that people's disease remitted on it? Absolutely! Do I believe that cancers, MS and other autoimmune diseases remit? Yes. Do I think they are related? I don't know. Do I think that all autoimmune diseases are just one great dysfunction of the immune system and not separate diseases? A little - clearly we don't have all the answers as to how many variations of things there are.
What if people feel better on LDN because they suddenly have a higher circulating level of endorphin? Certainly feeling better would allow the body to attempt to heal more effectively. The "placebo effect" is the effect of hope on one's perception of how they feel. An increase in endorphins would, in my mind, possibly create such a placebo effect of feeling better.
I wish that I had seen some evidence that people truly were better and didn't just feel better. We know that MS continues it's attack on the central nervous system even when there are few symptoms. From what I've read - and will continue to educate myself on - would I abandon my therapy and search out someone to prescribe it for me? I have to admit that I considered how wonderful it would be if such an innoccuous drug could relieve my symptoms, but as I read more I was not impressed enough to consider it further for me.
I am NOT condemning this treatment. I wish I had found some evidence that good clinical studies were under way. Good ones would take years and use MRI's to document improvement. I promise, tomorrow I will read more and try to answer some of these questions.
You all need to remember that I come from training in traditional Western medicine, which includied post-doctoral work in Immunolgy at UCLA. (I was the first pediatric AIDS Fellow in Los Angeles in 1985). I am not blind to it's failings or to the power exerted by the pharmaceutical companies with regard to their pressure NOT to look at therapies which cut into profits. At this time I am choosing to believe and accept the established treatment protocols for MS. It would be best if I do not comment on treatments that lie outside of the field of medicine that I have accepted for me.
If any one would like to talk to me privately about this, just feel free to write me at my nickname of neuroquix on the email site of gmaildotcom. I will continue to post what I find out if it sounds solid and promising. I do not intend to try to "debunk" LDN. I don't think that sounds healthy for the forum. I would just ask that you have some skepticism for "personal" reports of fabulous results on anything. People's stories about their own experiences are interesting, but do not predict what will happen to another.
The University of California, San Francisco (big-time excellent medical center) is conducting a study of LDN (along with any MS meds people are already on) to determine whether it is beneficial in MS. This is good news. A lot of ground-breaking research comes out of UCSF.
Quote from :http://www.ucsf.edu/msc/research.htm#LDN
Low Dose Naltrexone
A Randomized, Placebo-Controlled, Crossover-Design Study of the Effects of Low Dose Naltrexone on Quality of Life as Measured by the Multiple Sclerosis Quality of Life Inventory (MSQLI54)
Dr. Bruce Cree and his colleagues from the UCSF department of Neurology are running this randomized, double-masked, placebo-control, cross-over clinical trial to evaluate the efficacy of Low Dose Naltrexone (LDN) on the quality of life of MS patients.
Naltrexone has been approved by the U.S. Food and Drug Administration (FDA) to treat alcohol and opioid addictions (using 50 mg dosages). Whether LDN has any benefit for people with MS is currently unknown.
LDN may assist you with your MS in one of two ways:
By improving your immune system’s function through increasing the level of endorphins and enkephalins, chemicals which are produced by your nervous and immune systems.
By reducing the activity of cells that damage the brain and spinal cord in MS.
If you participate, you will be randomly assigned to one of two groups. Both groups will receive LDN for eight weeks and a placebo for eight weeks. One of the groups will receive the LDN first, and the other group will receive it last. Neither you nor your doctor will know which group you are in until after the study is complete.
If you enroll in this study, you must continue to take any MS medications that you’re already taking. For eight weeks, you will take either the LDN or the inactive placebo every night before going to bed between the hours of 9:00 PM to 3:00 AM. You will take neither drug for the ninth week. Finally, you will take the other drug for the last eight weeks of the trial. You will be asked to answer a questionnaire (called “MSQLI54”) at the baseline and at weeks 8 and 17.
Additional treatment with LDN is not offered as part of this study, but once the study is completed, you will be notified if a beneficial effect of LDN has been found. If the study finds that LDN is beneficial, you can discuss off-label treatment with LDN with your doctor. LDN is available through some compounding pharmacies.
You are so thorough. I've just joined the forum and left a post (new to forum - have concerns). I'm motivated by the depths of your interpretations, and find them extremely encouraging. I'm currently walking the fine line between to med or not to med. . .
It's great to have this information to put this drug into context for everyone. It's a lot of information to digest. We can spend some time now discussing what this all means. I personally appreciate all you have done with your knowledge and training to decipher what is so difficult for the rest of us to comprehend. I know I speak for others as well when I thank you for doing all that research.
Before we all start begging our docs for this great new wonder drug, we can take a look for ourselves at different aspects of it. Anything used off-label like this can offer great benefits. But you have to do your research, as Quix has been doing. From my limited work in a doctor's office doing clinical trials, I know our FDA is great about holding off approval of drugs until they have deemed them safe and effective. Off label use is a little trickier. Something to keep in mind. We have lots to think about.
I also totally agree with the notion that diseases remit 'despite' the fact that patients are taking certain drugs, not necessarily because of the fact they are taking them. Sometimes patients just get better, right?
Also--big shout out to Dr. Quix for her being the first pediatric AIDS Fellow. I'm sure most of us don't totally get what it takes to acheive that. You first have to be nominated by your instructors during your residency (which is tough enough) out of all the other competitors, and then go to whatever institution you'll be serving your Fellowship, and be interviewed with all the final competitors for the postion. Tough spot. WOW! Impressive! We keep getting all these little bits and pieces about your wonderful career....
I wish you would write us a condenced version of your bio. I would love to know all of this kind of stuff about you.
If you where as thourough with your patients (i'm sure you where) as you are with us then I know alot of people sad you had to retire.
I wish that God would cure you and you could go back into practice. We would miss you dearly but think of the lives you would help and the ones you would save.
Thank you Quix, when you help me with something I feel like I am your only thought at that time. You show us so much individual attention. I know that's helped me alot knowing that you care for me that much.
I hope some day I can repay you somehow for all you do.
Yes, you ARE OK, lol! You know how much I appreciate you and all of you. Don't worry about me, I've been absent from the forum because 1) I went to bed, 2) they hauled me out of bed to see a gallery showing of a painter friend and 3) I may have cracked a molar at lunch and I'm blurrier than usual on codeine right now. Okay, you twisted my arm, someday I will regale you with my exploits hither and yon (Having seen hither, I'll take yon).
Chris over stated the glory of my fellowship. Boy, she even made me feel that I was hot stuff!!! I was the first Peds AIDS Fellow in "Los Angeles". Thanks for the embellishment, Chris. I was DOCZILLA!!
Carol, and everyone. I was not beating myself up nor am I searching for my hair shirt and flogging whip - but when I slammed down on your report of the prednisone dose, I did so making an "assumption" about what it's purpose was. That was crossing the line between educational advice and practicing medicine and served only to make her question her doc. I've reevaluated the whole thing and I still believe I was wrong and the apology stands. (so there!)
But, I will not slide into a freefall over it. It just reminds me , one again, to try to keep my P's, Q's and R's about me when I post. (No, the R's don't stand for anything, but the P's and Q's looked lonely)
I'm going to try to let the codeine dull my jaw for a while and I'll see you all later on tonight.
Welcome to sllowe (we'll need another name, please, I don't want to think of you as 'slow')...Frann, JPeterson, LATW, Janey (you tiptoed in just that one day. Come back!! I think we already bonded to you!) and lacijo!! AND to those two of you who have been lurking for the last several weeks, reading our posts and wanting to dive in, but feeling embarassed! We need you all! We are going to town!!
Quix DID say she had the first pediatric aids Fellowship in LA, but being a Fellow IS a huge deal. Fellows are an elite college of doctors, don't let Quix fool you. If you see a frame on your doctors wall that says she or he is a Fellow, respect that! It took some doing! You can't knock yourself down a peg, Quix, sorry! Must be that damned codeine making you think funny!
I was just given a script for LDN and am taking Copaxone, it's my understanding that it's one of the ABC drugs that can be taken together.
I'm going to start with 1.5 mg for 10 days, increase to two pills for 10 days, and then go to three pills (4.5 mg).
Hi! Thanks for posting. As you can see this discussion took place way last summer! I haven't looked to see the results of the studies that were in progress. I'll see what's happening.
Meanwhile, why don't you go to the main page of this forum and start a new thread, (By Posting a Question) It doesn't have to be a question. And tell us about yourself, your experiences and what led up to the use of LDN.
This is great. We need to revisit this topic. Welcome to the forum!
First of all Low Dose Naltrexone - LDN (4.5 mg) is only 1/11th of the normal 50 mg dosage.. it only last 4 hours while you sleep.. and has been used since 1985 by research MDs for cancer and other patients..
To see the Research MDs discuss it.. I suggest you visit youtube ******* and search either "Alpha Lipoic Acid" or "Naltrexone" .. it is eye opening..
I have been on it via my MD for 10 weeks.. and have had nothing but positive results..
Especially NO HIVES allergy attacks.. reduced pain, bicep tendon improved, etc..
It is not going to hurt you, kill you, etc.. even MDs take it.. my Compound Pharmacy told me..
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