Useful LDN Information

[Zuzus11z]

"...it's bad for business." Ouch - that is a sad fact of the matter. It's almost like the NMSS serves as the greeter at the MS Pharmaceuticals WalMart store...sigh

[Lianne]

I just felt like coming back to explain my situation a little bit more for anyone else interested in trying LDN. I' ve had RRMS since I was in my 30's and I'm now 61. I typically would have a relapse every few years without any lasting affects, until about 7 yrs ago when I started having relapses every year.

After the last one I was left with leg weakness and fatigue. About a year and half ago I started having some arm weakness. I have never taken any DMDs as I tend to stay away from all pharmaceuticals. In desperation, I decided to try LDN as it seemed to be the least toxic. I've been on it for the last 18 mos. and have not had a relapse (other than the itching/burning of a few nights ago which has gone away) and overall I have felt less fatigue. I still have some leg weakness, off and on, but I'm walking without assistance.

I've been on a very low dose (2 mg.) as my neurologist (I had to beg him for it) didn't feel comfortable raising the dose. He has now retired and I'm going to another neurologist who has agreed to continue prescribing it and he has just increased the dose to 3 mg. This being said, I'm still a bit skeptical, even though I've been doing well. If I can get to two years without having any relapses/progression then I will honestly say that I think it's due to the LDN. I'll post again in this thread in a few months.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Kaitar]

I would like to add that my sister has been taking LDN for nearly 5 years. It doesn't interfere with other meds so neuro has been fine with it.

Does it help? Don't know. She believes it does and I think it has stabilized her mood and outlook. It doesn't have much in the way of side effects (practically none listed for LDN and she has never had any).

If it only helps her sleep, it's a good thing and well worth it in my opinion. It's not risky to try like other DMT's so give it a go. It's cheap and can even be ordered online if you can't find a compound pharmacy near you.

[misslux]

Got an Rx from my physiatrist today without issue. She said it was safe so has no issues prescribing to patients who ask/read up on it even though there isn't solid evidence.

[knuckle]

Regarding "solid evidence"...

Since LDN is an off-label use of a cheap generic drug don't expect a big pharmaceutical corporation to invest millions in clinical trials and FDA approval to try and turn it into $50,000 a year MS drug.

However, you may want to do a little research on a start--up company called TNI Biotech who has spent millions on acquiring LDN and associated patents to bring LDN to market in Africa and China. Through it's partnerships, TNI expects to sell over a billion doses this year of LDN for HIV/AIDs, cancer and autoimmune diseases.

Furthermore, there is quite a lot of "solid evidence" for the efficacy of LDN for Crohn's Disease, which has some similarities to MS.

About TNI BioTech, Inc.

TNI BioTech, Inc. is a biotech company working to combat chronic, life-threatening diseases through the activation and modulation of the body's immune system using our patented immunotherapy. Our products and immunotherapy technologies are designed to harness the power of the immune system to improve the treatment of cancer, infections such as HIV/AIDS, chronic inflammatory diseases, and autoimmune diseases.

Our proprietary technology, therapies and patents include the treatment of a wide range of cancers. Our most advanced clinical programs involve immunotherapy with met-enkephalin ("MENK") (sometimes referred to as opioid growth factor ("OGF") and our Low Dose Naltrexone product ("LDN"), which have been shown to stimulate the immune system even in patients with advanced cancer. Even though management considers any condition that results in altered-immune response a target for investigation, the Company will most likely pursue additional investigations for MENK and LDN as valuable candidates in the treatment of the following: autoimmune states such as rheumatoid arthritis and multiple sclerosis; as an adjunct in cancer patients undergoing chemotherapy, radiation treatments or surgery; and as an adjunct to antibiotics in the treatment of a variety of infectious diseases, including patients with AIDS, in combination with retroviral drug therapy

[Myoak]

I posted this link in the Charcot Project thread but should add it to Useful LDN Information.

https://www.youtube.com/watch?v=f2iSWKypWks

An excellent interview conducted by Dr. Daniel Kantor at the 2014 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) with Dr. Turel of Penn State explained one mechanism of LDN’s action as reducing proliferation of T-cells and B-cells.

Some of the most effective MS DMTs reduce proliferation of B-cells in the CNS… Tysabri prevents B-cells from crossing the blood brain barrier and Gilenya sequesters B-cells in the lymph system. Another highly effective med although not FDA approved as a DMT for MS is rituximab, which kills B-cells.

[J-Bo]

I asked my MS doc about LDN, and he said he would not prescribe it. I asked him, "Why not, since it's so safe?" and he asked me if I believe in homeopathy. I said "No, I don't think it makes any sense." He said that "LDN is just like homeopathy." I'm not sure I believe that, but it's clear that if I ever get to try LDN, it's not going to be with his help.

I'm not sure I'm going to stay with this guy, though. Not necessarily because of the LDN verdict, but because it makes me very uneasy that he tells me that pain is not consistent with MS when I complain that I'm hurting. I mean, that's a really stupid and uninformed opinion, isn't it? It's certainly not factual.

[Lianne]

Hello J-Bo,
I hope you can find another neurologist. It seems that pain with MS is not that uncommon so I don't understand his response to you.
Regarding the LDN, I'm still on it, going on close to two years. I do believe it's helping me. I felt like I was progressing two years ago and I haven't felt that since I started on the LDN. I also take 20,000 IU of Vitamin D each day.
I've had a very hard year due to family issues, which have caused a lot of stress and depression. I try to stop and realize that the most important thing is that I'm still walking and independent.

[knuckle]

"LDN is just like homeopathy."

That is such an idiotic statement I would question taking advice from anything else the guy says.

My neuro prescribes LDN and lot's of others do as well.

I think the problem arises with an uninformed, and too lazy to care, neuro is when you position LDN as an alternative to a mainline MS drug like Avonex, Copaxone, etc. If they're uninformed they fill threatened on numerous fronts so they blow you off.

But, if you go in positioning LDN for symptomatic relief, say MS-related fatigue, you may have more success. Plenty of drugs are used off-label for MS (fatigue, spasticity, pain) and neuros don't have a second thought. You next just have to educate them on how to prescribe LDN.

I find it troubling that many neuros have no problem prescribing you chemo but get all flustered when you ask to try LDN which is less toxic, non toxic, than aspirin.

[Driverway]

I've been off LDN for 6 months after 10 years on. My life is definitely MesSier!

Symptoms I haven't had in 10 years returning with a vengeance. Sleep 16 hours a day and still exhausted, walk like a drunken sailor most of the time, double/hazy vision, dropping things, brain fog keeping me clueless. Oh and it's much harder to pretend all is well. Most of my friends really never knew I had MS. But, now I'm calling for a ride because I don't want to be behind the wheel of a car.

I tapered off the LDN by 1mg per week. I was on 6mg because when it got hot 4.5mg wasn't enough. I went off the LDN because my neuro wanted me off for Tecfidera. I'm PPMS and to be honest it will probably be as much of a bust as Copaxone. I have been off LDN before suddenly because my prescribing doctor didn't get the Rx called in and I was in the hospital with a lesion within a week. I didn't experience an exacerbation when I tapered off the LDN, just more returning symptoms the longer I'm off it.

I want LDN back as it definitely makes a difference with my quality of life. On LDN I had more good days than bad. Now I really feel that MS has taken over and the symptoms are too overwhelming to ignore.

Also, when starting LDN, I tapered on 1.5mg per week. It was a slow subtle difference in MS symptoms. Less fatigue, deeper sleep at night, fewer naps, better leg strength, normal gait, brain fog lifted, less vertigo, and finally years later enough balance to ride my bike again!

LDN wasn't a cure. It just gave me more functional hours per day and a few days where I was symptom free. After the first year of stomach upset (take a TUMS or Calcium supplement and don't take with just water or it burns all night) and insomnia (try a Rx or 6mg of melatonin), there were no side effects at all. Also I avoided opiate derivatives as I assume they would negate to effects of the Naltrexone. Difficult as doctor's want to prescribe them left and right. I just added opiates as an allergy to my med records, and stayed on top of the situation ... Especially for oral surgeries and colonoscopies. Without the symptoms of MS, my drug intake was minimal. An occasional Aleve and LDN.

Good luck all!

[Myoak]

New scientific evidence highlights anti-inflammatory properties of LDN in 2014 NIH published study, “The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Quote, “Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome… LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.”

“There are no reports of LDN interactions with other medications… Pharmacologically, there is little to expect in the way of interactions… An obvious exception is LDN co-administered with an opioid…”

“One of the most exciting aspects of LDN is the low reported incidence of adverse side effects. We have not seen incidences of ulcers, renal insufficiency, interference with warfarin and other common medicines, increased heart attack or clotting risk, or other problems that can be seen with nonsteroidal anti-inflammatory drugs.” End Quote.

Wow! Really makes me wonder how long disease societies can continue denying researchers funds for the study of LDN in MSers.

[J-Bo]

Since my neuro won't let me give LDN a try, I've just thought of another approach: there is a compounding pharmacy in my area, and I wonder if I can get them to advise me on how to get this prescribed for me. I don't know if they are allowed to do this, but I figure that it doesn't cost anything to ask.

But I just saw in the previous post:

An obvious exception is LDN co-administered with an opioid…”

I'm on methadone for neuropathic pain. It's a very low dose, and I don't think it's really helping much, and if LDN helped with the pain, I'd be more than happy to ditch it in favor of LDN.

Off topic--why is this putting in links to advertisements on some of my words? I see these when I Preview Post.

[Seasha]

Off topic--why is this putting in links to advertisements on some of my words? I see these when I Preview Post.

J-Bo - the staff here hasn't seen anything like this before. It sounds rather strange

My suggestion would be to email technicalsupport@msworld.org
Explain what is happening and ask for help. Either that or start a new thread in our technical support forum to ask this question.

Hope this gets resolved.

[J-Bo]

Well, it doesn't look like the links show up in the actual post, so I guess it's not a problem. But yeah, it was weird--they were that traditional shade of blue for links, only they were double underlined instead of single. It did it for "compounding pharmacy" and "neuropathic pain" and when I moused over them, they displayed those little popups. If I see them again, I'll take a screen shot to send to tech support.

[Lianne]

Reading from my insert from Skip's Pharmacy, "Low Dose naltrexone should not be taken until opioid agonists are completely out of one's system." So you would have to be off of the methadone completely, but I think you already know that. Since you say it's not helping you and you are on a low dose, hopefully you will not have a hard time getting off of it if you choose to do that. My husband's been on it for 20 yrs. so I know how addictive it is and how hard it has been for him to get off of it.
Regarding LDN for pain - I don't have pain from MS, but I do have arthritis pain and LDN does not seem to have any effect on pain (at least for me). But, I do recommend it for all of the other MS symptoms.
Hope it all works out well for you!