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View Full Version : LDN (Low Dose Naltrexon) and Wegener's?



02-05-2011, 10:25 PM
Has anybody heard from 'Low Dose Naltrexon' as a treatment for auto-immune diseases, and especially for Wegener's?

I stumbled on it on the internet, and saw that some people's disease activity improved after they started using this medicine, but till now there is little scientific evidence that it works for large(r) groups of Wegener patients.

drz
02-06-2011, 06:28 AM
Has anybody heard from 'Low Dose Naltrexon' as a treatment for auto-immune diseases, and especially for Wegener's?

I stumbled on it on the internet, and saw that some people's disease activity improved after they started using this medicine, but till now there is little scientific evidence that it works for large(r) groups of Wegener patients.

Here is a reference on it:

Naltrexone Low Dose (http://www.naltrexonelowdose.com/)

but this reads like a commercial and it is put out by the drug company. It seems strange that if it is half as effective as they claim that it would not be widely used? Why isn't it?

drz
02-06-2011, 06:32 AM
Wegener's Granulomatosis

D. is a 62-year-old male. In February 2000, after 3 years of recurrent upper respiratory symptoms and cough, and more recent difficulty with vision, he was admitted to a Boston medical center because of suspected vasculitis. He had lost energy and could not walk more than ten to fifteen steps without having to rest. The autoimmune disease Wegener's granulomatosis was considered probable, due to an elevated sedimentation rate (80) and a positive Anti-Neutrophil Cytoplasmic Antibody [ANCA] level of 65. In May 2000, nasal tissue removed at surgery confirmed "necrotizing vasculitis … highly suggestive of Wegener's granulomatosis." He was treated with corticosteroids for nine months, until January 2001. The ANCA test was 1.9 in July 2000, 12 in January 2001 and back up to 40 in May 2001, at which time he was experiencing marked fatigue and upper respiratory symptoms.
D. started using low dose naltrexone (4.5mg) nightly in mid-May 2001. After several weeks he noticed a decrease in congestion and a noticeable increase in overall energy. Subsequent tests of ANCA were 16 in August 2001 and the most recent test of ANCA in late December 2001 was down to 1.0. As of September 2002, he continues to report a high energy level—equal to that prior to disease onset—and he is enjoying his noticeable improvement in overall health.

02-06-2011, 06:39 AM
Thanks for reacting, drz.
Yes, if it is half as effective as they claim it would be, why is that? :sad:

Just thought it was interesting. I know a doctor who can prescribe a low dose (3 or 4,5 mg, not 50 mg).
I'm not taking this, but just was looking for info about this.
Seems interesting...


...blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.

marta
02-06-2011, 06:42 AM
I just downloaded a book on my new Kindle called "LDN, Google it" after I did a search for books on autoimmune dieseases. I haven't read it yet, but it's funny that you're posting it here. Now I'm totally curious.

drz
02-06-2011, 07:31 AM
I did find a mention that it had not been submitted for FDA approval to treat some of these other diseases. Another place mentioned the positives are from anecdotal reports and not hard research results. So why isn't some one doing such research.

Sangye
02-06-2011, 09:34 AM
I see Dr Seo again in March and added this to my list of questions.

marta
02-09-2011, 11:44 AM
Another commercial for Nfaltrexone? So why haven't we heard about it?



So I just finished reading the book I mentioned I bought just days before this thread went up. Very intersting indeed.

I have had a serious misconseption shattered (I didn't even know that I misunderstood auto-immune diseases like I did) and have learned some interesting things along the way. I will share in a nutshell what I've learned from the book.

1. I thought auto immune diseases meant that the immune system is overactive. I was in fact wrong. It means that the immune system is deficient and has a hard time distinguishing between self from non self (which I knew) , but it is not over-active like I have assumed all this time.

2. Although there is no known immune system regulator, research is showing more and more that perhaps the regulator of the immune system is the body's endorphins.

3. People with auto-immune disorders and other neurological diseases as well as some cancers and HIV/AIDS tend to have 25% or more decrease in endorphins in the blood.

4. As you can see on the link above from drz, what this drug does at low doses is inhibit endorphin production during the essential hours of the night using a low dose, short term spike which in turn forced the body to create two to three times more endorphins for the following day. The increase in endorphins helps to regulate the immune system into functioning properly.

5. The drug was FDA aproved for recovering drug addicts at 50mg per day, but due to unpleasant side effects at that dose doctors stopped prescribing it. It has lost it's patent and is now a generic drug, so there is no point in drug companies to do millions dollars worth of research for other diseases as they stand to not make any money from the findings. Nobody markets it and nobody really makes any significant money from it.

6. Because doctors are afraid of litigation they are hesitant to prescribe 'off label' meds, which would be the case in our situation. But it's perfectly legal and ethical - as we have seen with rituximab.

7. The drug is very inexpensive ($30 or so a month - quite different from our cocktail) and has literally no side effects. It said that 1 out of 50 patients might experience sleep disturbances the first week, but that inevitably goes away after a week, and besides we're all use to that with pred. It also increases the endorphins, so you're feeling pretty good to boot. There also seems to be no contradictions with our drugs, but I will double check with my doc and the pharmacist.
It is recommended that people who have had organ transplants and are on immunosupressants as well as people taking any drugs with opiates should not take this (opiate users should stop taking the drugs for two weeks before starting LDN, and organ transplant patients can offset the effects of the immunosurpressants in accepting the new organs - so that might be dangerous)

8. If you do get a prescription here are a couple of things to ask for.... make sure to ask that they don't prescribe the 'slow release' version, as it is not effective in treating what we need treated. Also because they need to have a filler in the capsules for the low dosages (so a compounding pharmacy will need to put it together), ask that they don't use calcium as a filler as it blocks absorption. The other options are lactose or sucrose as fillers as they don't mess with the absorbtion.

The book I read is called 'Google LDN!' by Joseph Wouk. Book is so so, but the appendix is great.

How's that for blah blah blah. I'm going to look into it further in the next couple of weeks. If it can't hurt and can make you feel better and might be able to help with the disease, why not???

http://www.ldners.org/resources.htm
http://www.lowdosenaltrexone.org/

pberggren1
02-09-2011, 05:00 PM
Very interesting Marta. Thanks for the info. I will try and remember to ask my doc about this next time.

elephant
02-09-2011, 11:55 PM
Exercise releases endorphins, oh so does chocolate!

Geoff
02-10-2011, 12:07 AM
Really interesting post Marta. Its great to read about 'new' drugs and treatment.

Tell me Elephant...what chocolate hits the spot for you??

Sangye
02-10-2011, 02:04 AM
Interesting info, Marta. I've got LDN on my list of questions for Dr Seo next month.

drz
02-10-2011, 03:38 PM
Marta

Thanks for the info. It helps explains the inactivity on research for it.

stikker
02-11-2011, 11:54 AM
I saw Dr Merkel today and I asked him about it. He just laughed at me and said we don't prescribe it.

marta
02-11-2011, 12:38 PM
I saw Dr Merkel today and I asked him about it. He just laughed at me and said we don't prescribe it.

That's what the guy who wrote the book experienced. His doctor just shrugged it off but the author asked for a prescription regardless and while he was holding off getting an infussion of an immunosupressant (which incidentally is also known to cause the odd case of PLM - like rtx) for a different reason, he was only on LDN and one other drug for his depression. It was in this time that his symptoms completely disappeared. I don't know that I can take it while on ctx, but after the rtx infussion I will definitely ask for it, as it seems like it can't do any damage, and has a potential to do some good, so why not.

Sangye
02-12-2011, 02:37 AM
Please do not experiment on yourselves with this drug. I don't know if it works and am not qualified to say anything about that. But disrupting the endocrine system can cause havoc--nothing that does that is benign. That much I know.

Marta, if you take it after the rtx and you feel better, you'll never know if it was the rtx or the LDN. I don't think that's a good idea at all. At the very least, please make sure your doctors know what you're doing.

I'm definitely going to ask Dr Seo about it next month. I know he'll give me the exact reason for why it isn't being used.

stikker
02-12-2011, 11:02 AM
I was going to say the same thing. I'm not willing to experiment on myself. It can always get worse!

marta
02-12-2011, 12:30 PM
Thanks guys, but I would NEVER 'experiment' on myself. I will definitely talk to my doctor and do it with their blessing. It's also a prescription drug, so I couldn't do it on my own. I am not a dummy and have a lot to live for, which is why I want to take every possible opportunity to live a healthy normal life.

02-16-2011, 08:58 AM
...disrupting the endocrine system can cause havoc--nothing that does that is benign.

...I'm definitely going to ask Dr Seo about it next month. I know he'll give me the exact reason for why it isn't being used.



I asked my Wegs-specialist about LDN, he also laughed about it and said something like 'one cured patient isn't enough evidence'. That's all he said about it. As a scientist and investigator, he doesn't take it seriously. From a medical/scientific oint of view it's understandable, still I am very curious about LDN, and I tend to agree with Marta that it probably won't do much harm, and might be worth trying.
Wonder what your Dr Seo will say about it, Sangye!
By the way, what is 'havoc'?

Sangye
02-16-2011, 09:01 AM
Havoc basically is the same as chaos.

02-16-2011, 09:07 AM
Oh. I see. But LDN is really LOW dose, 3 to 4,5 mg. Would that be enough to disrupt the endocrine system?
Doesn't make sense to me.
Still I agree, WG-patients have to be carefull.

Sangye
02-16-2011, 09:17 AM
If you look at the mechanism of action, it works by interfering with the endocrine system. It's such a delicately balanced system and takes very little to disrupt it. Also, it runs by feedback loops. Whatever change you make in one hormone sends feedback to others. You cannot change a single hormone in the body without the entire endocrine system being affected. This is why pred causes such deep and extensive damage, even when used at low doses.

02-16-2011, 10:56 PM
This is why pred causes such deep and extensive damage, even when used at low doses.

Hmm. Interesting...
Still...most WG-patients HAVE to use 'pred', simpley because there is no alternative.
Would be very interesting if some medical student would start an investigation,
a scientific trial to test whether medication like LDN is really effective,
and if it has less side-effects then predniso(lo)-ne. :rolleyes1:

Sangye
02-17-2011, 08:33 AM
Absolutely, no way around pred. There just isn't any other drug like it, or any natural supplement or herb that can come close to what it does.

I wouldn't hold your breath on a medical student testing LDN. It takes a lot of money to do even simple research that is of high enough quality to be useful.

norcalian
06-26-2011, 03:12 PM
Hi Sangye, Did you ever get any info from Dr. Seo about LDN?

Sangye
06-26-2011, 11:12 PM
Yes, each time I see him I start a thread taking questions ahead of time. I put the answers in that same thread. You might do a site search for LDN.

norcalian
06-27-2011, 01:45 AM
Yes, each time I see him I start a thread taking questions ahead of time. I put the answers in that same thread. You might do a site search for LDN.

Found it. Thanks!

norcalian
06-27-2011, 01:49 AM
Some of you may have already seen this article...It's a little nauseating...but it's also interesting what researchers are looking at out there.

Worming Your Way To Better Health - Science News (http://www.sciencenews.org/view/feature/id/68701/title/Worming_Your_Way_to_Better_Health)

Sangye
06-27-2011, 12:05 PM
Very interesting article!

Three years ago I had a small Wegs leg ulcer explode into a huge one over the course of a couple days. It was horrific and no doctors could figure out how to get it to heal. A vasculitic ulcer is much different from the usual skin ulcers they see, like diabetic ulcers. Vasculitic ulcers have too much blood flow to the area and are extremely painful. Diabetic ulcers have insufficient blood flow and look horrible but are painless.

I finally decided to see about using medical maggots to heal the wound, since it had just been FDA-approved a couple months prior. I couldn't find anyone to use them on me. I finally contacted a doctor in another state who was famous for using them but he said he would never use them on a vasculitic ulcer-- it was contraindicated. The procedure for treating with maggots is really quite frightening, as the maggots stay with you for several days!

Sangye
07-05-2011, 12:44 AM
Here's the thread containing Dr Seo's opinion about LDN: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/1479-questions-dr-search-engine-optimization.html

mrtmeo
01-30-2015, 03:15 PM
I know this is an old post, but the info is very interesting.
Here is a study showing autoimmune disease in rats show very low endorphins controlled by the hypothalmus
Hypothalamic beta-endorphin concentrations are decreased in animals... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/10408966)

It sure sounds like LDN could have some benefit by gradually increasing the dose (starting extremely low) so that the body will upregulate endorphins gradually to help the immune system function properly.
I wonder if this would be of more benefit once someone is in remission?

This explains why exercise improves health problems because it increases endorphins.

mrtmeo
01-31-2015, 06:39 AM
This is interesting.

Enkephalins and endorphins as modifiers of the immune system: present and future.
Enkephalins and endorphins as modifiers of the immune system: prese... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/2981735)

mrtmeo
01-31-2015, 08:11 AM
This is encouraging although it is for crohn's disease and not vasculitis.
None were allowed infliximab, unfortuneatly, but any other medications they were on more than 4 weeks prior to the study were allowed.
A remission of 67%,after 3 months, is pretty impressive, but not sure what drugs they were on to start with.
http://www.nature.com/ajg/journal/v102/n4/full/ajg2007152a.html