Low Dose Naltrexone

[whitefoot]

Low dose naltraxone was originally used for AIDS patients by Dr. Bihari in the late eighties and later used for some forms of cancer. In the last ten years it has been used with some success for MS. However, to date , there is very little information on its success with RA. My wife used it for 10 years, among many other natural products, after coming down with colon cancer metastisized to liver cancer. We do not know if it helped because she was and is taking many other compounds. However, she did develop RA last Sept after many years of taking low dose naltraxone (LDN). The most reliable compounding pharmacy may be able to give you up to date info on LDN for RA. The pharmacy is Irmat Pharmacy in NYC.

Good Luck

Chris

 

 

 

 

[nspiker]

Mum,  Thanks for the links on LDN and lyme. 

I felt horrible all day today, with some really strange symptoms.  I also had a bloated feeling and nausea, crankiness, along with chest tightness and almost difficulty swallowing.  Thank goodness, it went away after about ten hours. 

I'm wondering how long ldn stays in the body….
nancy

 

[Maz]

[user=2034]whitefoot[/user] wrote:

My wife used it for 10 years, among many other natural products, after coming down with colon cancer metastisized to liver cancer. We do not know if it helped because she was and is taking many other compounds. However, she did develop RA last Sept after many years of taking low dose naltraxone (LDN).

Hi Chris,

Think this is the first time you've posted and just wanted to send you a wave and a welcome. 🙂 Just so very sorry to hear about your wife's ongoing battles with cancer and now RA.

You're right that there don't seem to be many studies on the use of LDN for RA…I've searched, too, and only found one presentation given by Dr Berkson and it appears he was also treating his patients with minocycline simultaneously, so hard to tell which treatment was the successful one. I can only conclude that the two were synergistic in some way, but that minocycline is also a standalone, very effective treatment.

I have read that LDN may lose effectiveness over time and there have been suggestions by treating physicians in those instances to pulse dose the LDN. Did your wife try that? Also, has she just begun AP or looking to start it? If you need an AP physician list, let us know and we'd be happy to send one to you and please send regards to your wife.

Peace, Maz 

[bhodson]

Hey Gang,   I got the LDN compounded today.  I took my first pill and then just read on a LDN website that if you are having any surgery then you should stop the drug for a week before.  I'm finally having some of the abdominal nodules biopsied Monday morning so I think I better hold off on any more doses of the LDN till after Monday.  I was SO excited to get started on the Mino and the LDN that I think I jumped the gun a little bit!!hehe   Thanks again for all your help!  Becky

[Eva Holloway]

Chris,

talk to jtubman, his wife has/had cancer and is on LDN. You may get more info from him and his wife.

Eva:D

Eva Holloway

[linda]

bhodson,

I was doing some research on LDN for my FM pain and in my reading found that LDN should not be used in conjunction with immunosuppressants such as mtx, prednisone higher than 7 mg or biologics. If anyone who has seen their symptoms flare after starting LDN, this may be why. I believe it decreases the effectivness of the those drugs. My internet service was down for 8 days and now i can't remember where I read this information, but I will try to find it back. I remember that I was really psyched about it after I watched a video on recent FM research, but then was very discouraged when I found out that it shouldn't be used with immunosupressants.

[PhilC]

[user=11]linda[/user] wrote:

I remember that I was really psyched about it after I watched a video on recent FM research, but then was very discouraged when I found out that it shouldn't be used with immunosupressants.

Hi Linda,

I have a surprise for you. The “information” about LDN and immunosuppressants being incompatible is most likely false or only partially true. I discovered this after a woman asked about taking LDN and prednisone, and I did a little research in order to try to answer her question. I wasn't satsified with just being a “parrot” and telling her the standard answers one sees repeated all the time on the various LDN forums.

What I discovered is that there are people using LDN in combination with several different immunosuppressants and seeing good results. I didn't spend a lot of time looking into it because I didn't have much time and only needed enough information to answer that woman's question, so I don't know if it is true for all immunosuppressants or just a few of them. I should add that, technically-speaking, it is anecdotal evidence and not proof of anything, but I think it is exciting nonetheless.

Based on your message I have to assume that you are taking one or more immunosuppressants. May I ask which one(s)?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[linda]

Wow, Phil, a light at the end of the tunnel? Maybe?
I'm currently taking mtx, Simpooni (a biologic) and prednisone-however, I'm down to 5 mg/day-from 15 mg/day!yay me!-so the pred is not the problem. It's the mtx/biologic. I know I'm not a doctor, but it seems like pred suppresses more of the immune system than the biologics which target specific substances in the immune system.

I've been studying endorphins and how to increase their levels in way other than using LDN b/c I thought I couldn't use it until I dc the mtx/simponi. I've found some interesting information. Apparently anything that causes the body to send pain messages to the brain will stimulate the production of endorphins, this includes spicy foods, and acupuncture or acupressure. But there are other things that trigger it as well, like chocolate, laughter and sex. In whichever order one prefers.

I'd love to see any information you could find on combining LDN with immunosuppressants. Why would some doctors say they are incompatible, it's not like their patients are going to stop taking the expensive drugs that only they can rx, so they wouldn't lose business. Hmm, I'm going to have to do more research myself and ask my Dr. Wonderful about this when I see him this week. Thx for the update.

[mschmidt]

Linda,

I would also make a phone call to a pharmacist and ask him/her about using LDN with a biologic.  I just had surgery this past week, and had to stop taking the LDN because I'm on pain pills.  She also told me that I need to wash off my pain meds and wait 2 full weeks before re-starting the LDN.  (it will increase the effects of any opiate containing meds)  It specifically states on the printout of my prescription that you need to consult with your doctor or pharmacist if you are currently taking immunosuppressive drugs or biologics, as well as pain meds.  It's better to make sure that you get that info before starting LDN.  I'd hate to have you experience any unnecessary side effects. 

Take care,

Maria

[linda]

Hi Maria,

Yes, what I read has stated that it interferes with the suppression of the immune system, and makes those drigs less effective. They're already not working great for me as it is, but I would really love to sleep for more than 2 hrs at a time. Thx!

[PhilC]

[user=11]linda[/user] wrote:

Why would some doctors say they are incompatible, it's not like their patients are going to stop taking the expensive drugs that only they can rx, so they wouldn't lose business.

Hi Linda,

It's not about losing business, it's about the fear of being sued for malpractice and/or losing the license to practice medicine. Some (many?) doctors don't want to touch LDN for those reasons, and a possible incompatibility with immunosuppressants makes for a good excuse not to prescribe it. I really don't blame them. We know that LDN makes some people worse, for reasons that aren't completely clear. That's a good enough reason right there to be cautious about prescribing it.

I suspect that the “information” about LDN being incompatible with immunosuppressants is not a fact backed up by real evidence, but an assumption based on the way that LDN is believed to work. In other words, an educated guess. Considering that scientists are still trying to figure out how LDN works, I think it's reasonable to approach it that way, even if it's not true, since it errs on the side of caution.

Regarding pharmacists, my attitude is to not just accept anything they might say about LDN without verifying it. One lady e-mailed me and told me that her pharmacist told her that it's perfectly okay to take LDN with tramadol. I am pretty sure that that's not good advice.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[whitefoot]

Eva

Thank you for your input on LDN. We didn't think LDN was a “heavy hitter” when it came to cancer, just another compound which might work on another  pathway. After ten years of LDN, it was difficult  to stop mentally, as one doesn't like to discontinue something that MAY have helped, but due to the uncertaintly of LDN for RA, we made a calculated guess to stop. After all, in theory, LDN did not stop the onset of RA.

Best

Chris

PS The dose of LDN for cancer is 4.5 – same for MS but I don't know for RA. Also, it is very important to buy from a good pharmacy, as some years ago, some pharmacies were either short dosing or not compounding correctly. It also may be that there has been some success with MS and some may think because both (MS & LDN) are thought to be auto immune diseases, it might help with RA.

 

 

 

 

 

 

[whitefoot]

Maz

Thank you for your encouraging remarks. Fortunately, my wife, who is in the 5 percentile of cancer survivors, is now ten years down the line from initial onset. So, our cancer protocol, exclusively diet, supplements, herbs etc has been modified as to about half of what she had been doing early on. With metatastized cancer, one knows that one is never totally in the clear.

We interviewed all the suggested docs in our area (NYC) from the Road Back list and found most of them wanting, some for their considerable consultation fees-$500 and up (they don't take insurance and want green/cash) or knowledge level . The family doc is very unsophisticated but will write a script for Minocin but doesn't have a clue about AP. We have gone to three rheumatologists and one pure immuneologist to determine the best course of treatment, considering my wife's considerable history of many illnesses, to determine which therapy would not only have the best chance for success, but not revive many past illnesses or cause a new one. That is why we had an extensive immmunological blood panel. All docs suggested Dmards, Biologicals and the newest one called Orencia. The side effects of all of these are scary. All the docs pooh pooh or demonized AP with bromides such as it causes Lupus, greying of the skin, an old protocol, takes to long to work, if it works at all. We are still deciding but leaning towards AP.

In the meantime, although she had severe RA, about a 40% reduction in symptoms has given us time to decide. This was accomplished by some diet modification-a lot of vegetable juicing and many many supplements and herbs. We believe the important supplesments are 6 grams of Krill Oil (must be NKO trademarked) 50 mg Rose Hips (I-Flex trademark) Montmorency Tart Cherry liquid and capsules, Celery Seed Extract 85% 3nB, Borage oil 2 grams, Autocin, Tumeric 3 grams( BCM-95) Wobenzyme 24 pills empty stomach divided doses. Of course there are the milder anti inflammatories such as ginger, yucca, SAME, stinging nettles, sarevho cats claw, msm, glucosomine  et al. We also have access to some injectible peptides from Belgium that a researcher claims after one monthy dose for six consecutive months will induce a cure in 80% of patients. But until I can find out the ingredients and a formal presentation, we will hold off. All of this is besides her  cancer protocol. The usual cavaet is what works for one doesn't work for all and I am not dispensing medical advice. Is there life after digesting all these juices and supplements? Yes! I hope this is of use to others, as I have been heartened by the compassion and empathy on this site. 

Best to all

Chris

 

 

 

 

 

 

[Eva Holloway]

my my Chris, your wife is taking a lot of stuff I thought I was taking lots of supplements, but she is way ahead of me. I hope and pray you will find a doctor that will take you insurance; so your wife will get the help she needs. I know there are several doctors here in Houston, TX that do AP but they also want the cash only and I sure don't have it being on Medicare. I found a doctor about 2 hours away from my house and she is very good. There has been days when I wonder if this protocol was working, and I can say yes. It is slow, but I didn't get sick overnight so I know I will not get well overnight.

Best wishes,

Eva:D

Eva Holloway

[linda]

It's all a moot point for me, Dr. Wonderful doesn't have any patients on it and doesn't feel knowlegdable enough about it to start right now. However, he is rxing the voltaren gel and another kind of anti-inflammatory that comes in a patch; he gave me samples of both for the tendons in the top of my feet, which are inflamed and make me feel like I'm walking on 2 broken feet. And he knows a NP who is a licensed acupuncturist and treats patients for pain management, he gave me her information. The DIY acupuncture just isn't doing for me.

I'm going to continue to look into LDN, I had not thought about the possible litigation as a reason doctors won't rx it, but it's probably true in some cases.

[Author]

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