Multiple Sclerosis & Low Dose Naltrexone – One Woman’s Story


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Vicki Finlayson and Low Dose Naltrexone

Before naltrexone relieved pain and symptoms of Multiple Sclerosis,

she had used Oxycontin and morphine for a year and a half

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While prescribing low dose naltrexone (LDN) for patients with pain in recent years, I have become deeply impressed with it. Of course, it is inescapable to get very far on the internet without seeing a flood of videos and comments on the use of low dose naltrexone for Multiple Sclerosis. I once spent an entire afternoon reading the literature and watching the videos of patients, doctors, and researchers. How I wish I had the links so I could post them here now! The stories of Dr. Pat Crowley sitting at his desk as his patients in County Kilkenny, Ireland, described the successes they had had with multiple sclerosis touched my heart deeply. Naltrexone is not a cure but its beneficial effects on the immune system have been described here and were first noted by Dr. Bihari in 1985. Dr. Crowley sees results in at least 70% of patients, particularly with neurogenic bladder.

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Vicki Finlayson has had a remarkable recovery from severe Multiple Sclerosis. I hope you will watch her interview here. It was recorded October 2008 at the Fourth Annual LDN Conference held for the first time on the West Coast at the University of Southern California, and is recounted below. Since then she has made it her mission to advocate for clinical trials of this medication but it has been difficult for patients to find doctors who will prescribe it.

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Has medicine come to the point where we no longer listen to patients, only to drug representatives that are only allowed by Congress and the FDA to discuss what has been fully approved with all its risks and benefits? Well….frankly, we are not always told all risks nor are they always discovered until years later. Naltrexone is an opiate antagonist. It will block morphine and similar pain medication. In much higher doses it has been approved for safety by the FDA in 1984 as treatment for opiate addiction, and in 1995, FDA approved for treatment of alcohol dependence. Doctors have been reserved about prescribing it off label for patients who request low doses of naltrexone for medical conditions such as Multiple Sclerosis. But the tradition of using medication “off label” for uses not approved by FDA is still alive. Weighed against the dangers of the illness relative to a small dose of a medication that appears to be benign, it appears to be a worthy endeavor to test.

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How tragic is it to hear a person with Multiple Sclerosis have to define their day in the world by how far apart the bathrooms are when needed for neurogenic bladder? That is the story that urged one Scottish research doctor to pay attention when his patient said low dose naltrexone cured his neurogenic bladder. That changed that doctor’s research career. When years of fatigue and heat intolerance may soon be gone because of this small dose, how can a doctor turn down trying it for a patient? I did a few years ago, to my everlasting regret. I know better now. In my defense back then, I had not heard any information from that patient or anyone about its favorable off label use. It was a call from another doctor. I would like to think that if the patient had made an appointment with me or written to tell me a little about it, I would have said I’d read on the subject.

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Vicki’s Story

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Vicki Finlayson had Multiple Sclerosis for 12 years and was very disabled for several of those years with Secondary Progressive Multiple Sclerosis.

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She tells how she was on Avonex for 6 years that caused flu-like symptoms so severe she was in bed for two days after each injection. She was so disabled her husband had to help her dry her hair. The medications used for Multiple Sclerosis caution about suicide risk and her husband hid knives at night for fear of what she would do to herself. She was unable to work, on medicare and social security disability. She missed the ability to work and says, “I lost so much dignity, I lost my sense of everything my parents ever taught me.”

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She detoxed herself off of opioid medication that had been prescribed for pain. Her doctors failed to help her do that. Apparently, she says, they had no experience with how to take her off those medications. And she began to take low dose naltrexone 4.5 mg. It took away all of her symptoms, including heat intolerance.

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She is delighted to be off of disability and back to work selling durable medical equipment to doctors. And she has been inspired since then to help others by raising money for research on use of low dose naltrexone for Multiple Sclerosis.

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Here is how she did it

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She walked 56 miles from her home in Auburn California to Sacramento in scorching hot 100 degree weather – without any heat intolerance that she had had for years before – to try to get the ear of the governor. She held fund raisers. And she got the attention of Dr. Bruce Cree of the UCSF Multiple Sclerosis Clinic to do the first academic trial on use of low dose naltrexone in Multiple Sclerosis, research which apparently was funded by her efforts. She is indefatigeable in her effort to help others.

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Dr. Cree’s poster presentation on the positive research outcome is here along with other scholarly publications on naltrexone. The publication can be read here: “A rapid on-line publication of the first randomised controlled trial of low dose naltrexone in MS in the Annals of Neurology has been reported prior to hard copy publication. The study randomised 80 people with MS to receive LDN or placebo in a cross-over study where people took the LDN or placebo for eight weeks, then swapped to the other study drug. This appears to be the first drug trial in MS that was not funded by the pharmaceutical industry, but by the participants themselves.”

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He closes with: “In conclusion, in this exploratory, single center study, 8 weeks of treatment LDN was associated with symptomatic benefit with respect to mental health, pain and perceived cognitive deficits in MS. Confirmation of these findings in a multicenter trial will be necessary to make definite conclusions about the possible symptomatic benefit of LDN in MS. A longer duration of treatment is necessary to determine whether LDN has any benefit with respect to physical outcome measures.”

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Here is a link to more clinical trials on low dose naltrexone, and here is a

summary of the first European LDN conference in April 2009 at Glasgow University.

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Vicki is very realistic about the chance of this work being extended by any university, NIH or the National Multiple Sclerosis Society. They rely on tens of millions of dollars to do the costly multi-center long term drug studies that must be done for this condition. That will not happen with a drug that is inexpensive, generic, and holds no promise from which any pharmaceutical company may ever hope to profit. Without such double blind studies, many, if not most doctors would be unlikely to prescribe this simple, inexpensive, low dose medication.

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Please see comments, below, that point to an excellent resource called LDNAware.org. “This website is your worldwide gateway to Low Dose Naltrexone information, resources and events.  LDN Aware is a volunteer group devoted entirely to spreading knowledge and raising public awareness about LDN as a treatment for autoimmune disease, cancer and HIV/AIDS.”

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Should LDN be used with other disease modifying drugs for Multiple Sclerosis?

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In my next post of May 16, 2010, an expert answers that question.


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“Never doubt that a small group of thoughtful committed citizens can

change the world; indeed, it’s the only thing that ever has.”


– Margaret Mead

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The material on this site is for informational purposes only, and

is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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9 Responses to “Multiple Sclerosis & Low Dose Naltrexone – One Woman’s Story”

  1. Sherri Says:

    Dr. Sajben:

    You are truly an inspiration! It is so nice and refreshing to hear about your positive experience prescribing LDN. I also appreciate the links to Dr. Cree’s study in the Annals of Neurology.

    I also have MS. I was diagnosed four years ago. I started on the mainstream, disease-modifying medications because I didn’t know about LDN. My lesion load during the first three years jumped from 10 to more than 60. I tried Avonex, Copaxone and Tysabri before I learned about LDN. It is misfortunate that I didn’t hear about LDN in the beginning of my diagnosis because I believe it would have kept the exacerbations at bay. Unfortunately, I am now permanently disabled and can no longer work as a nurse.

    LDN has done so much for me since I started it last May. My bladder function has almost returned to normal, I no longer have heat intolerance, I have less fatigue, my endurance is better and I regained feeling throughout my entire body. I lost feeling more than two years ago when I was having exacerbation after exacerbation.

    LDN is not a cure and it hasn’t taken away some of my other symptoms like ataxia, severe vertigo, dysphagia, cognitive dysfunction, muscle spasms or a good portion of the pain. But at least I have been stable as far as the MRIs are concerned, and that I’m grateful for!

    I know you mentioned spending a day researching LDN on the Internet. Did you know there is a new LDN site that tries to consolidate all information into one site? It’s called ldnaware.org. It is setup by country to make it easier. There’s newsletters, eBooks with testimonials, compounding pharmacies, research, etc. You might find this easier to find information.

    I have become an LDN advocate because I believe in this medication so much. I’m so glad you are, too!

    Regards,

    Sherri

    • Nancy Sajben MD Says:

      Thank you for the link. I will be adding it. [Update: the link is added on column right: Medical Resources & Information]

      Please say more about your progress if you continue to see results with LDN. Could you mention how rapidly you saw changes when you began to use it? What dose do you use and how often?

      Good luck to you.

      Warm regards,

      Nancy Sajben, MD

  2. Sherri Says:

    The first thing I noticed was an increase in energy. That happened within the first couple of days. I started on 3mg, by the way.

    Three months later I increased the dose to 4.5mg. That is about the time I noticed feeling again. The other improvements happened gradually. I take the 4.5mg at bedtime every night.

    I’m so glad I’m using LDN instead of the other medications. I won a battle with my neurologist back in September when she wanted to put me back on Copaxone and administer pulse steroids. I said no and got a second opinion from a neurologist at UCSF. He believed I needed to stay on LDN and he called my neurologist to discuss his recommendations. Thank goodness!

    I’m an advocate for LDN. I’m doing a little volunteer work with the LDN Aware group, run by Linda Elsegood in the UK. If you get a chance to look at the website, check out the links under the US tab.

    Also, if I can be of assistance with any research you are doing with MS and LDN, please let me know. I’ll help you any way I can!

    Warmest regards,

    Sherri

  3. Nancy Sajben, MD Says:

    Sherri,

    Thank you for helping so many others. No doubt you have worked through the decision whether to stay on disease-modifying medications or stop them.

    Please describe for others what you chose to do, and what you learned about that from Dr. Cree at UCSF Multiple Sclerosis Clinic or from other advocacy groups. I have now added a link to LDNAware, above, and in the links of the column at right. They have a spreadsheet chart of results that others with Multiple Sclerosis and various conditions can use: https://ldndatabase.dabbledb.com/page/cancer-researchcopy/ddXxiaHj

    It is said in the LDN community that it’s best to begin at 3 mg for MS if that person has spasticity. Did you have spasticity and, if so, did it become worse?

    Dr. Bihari’s hypothesis about LDN’s mechanism is well known, but Dr. Jau-Shyong Hong, Chief of Neuropharmacology at NIEHS/NIH has disproven that. Because of that, unrelated to MS, I have increased the dose in a few patients with various pain syndromes and been delighted to see their intractable pain resolve so they could return to full function. He and others in his lab at NIH have shown that naltrexone is a powerful anti-inflammatory that works centrally on the microglia. And it is the microglia that is the hallmark of pathology in MS.

    I am not aware of anyone with MS trying doses higher than 4.5 mg, but I would be interested in their comments if they have. I have attached some of Dr. Hong’s papers in my earlier post on naltrexone in May 2009.

    In contrast to that, in a personal communication, Ian Zagon, PhD, Professor of Neural and Behavioral Science, says

    ….”patients need to have LDN taken every other – and possibly every 3rd day. Use 3 mg. Why such a recommendation? Because LDN does nothing but trick the endogenous opioids (opioid growth factor (OGF)/met-enkephalin) and opioid receptors (OGFr) to increase in the 4-6 hours it is present, and in the subsequent period the excess OGF can interact with the excess OGFr and cause a marked inhibition of cell proliferation (works through the cyclin dependent kinases). This diminishes inflammation. That is the brief story. Want more – I can recommend many papers. The processing of LDN is dependent on the liver. In some patients, pharmacokinetics are slow, and metabolism is depressed – this elongates drug action.” If patients take naltrexone daily, they are “having too long a period of naltrexone – and not enough of the time for the interaction to occur.”

    I have prescribed doses up to 15 mg. Clearly some of my pain patients need only 1 mg because their liver lacks a chromosomal allele that does not process many medications. One patient who slowly metabolizes other drugs, whose intractable pain resolved on 1 mg (provided it continues to be used every night), had joint stiffness on a higher dose, and never had MS.

    The speed of relief is typically rapid, from 1 hour to 1 day, and rarely, one month. Of course the pathology is different. Pain pathways are complex and less than one percent of NIH grant money goes to pain research. Not every patient responds to naltrexone. Some respond instead to the other morphinan, dextromethorphan. Some do not respond to either.

    What impresses about naltrexone is how many distinguished researchers have been involved in its study since the 1970’s including a field of literature on it in Alzheimers and Parkinsons Disease, even binge eating disorders. A patent has been filed on its role in treatment of Alzheimer’s Disease.

  4. Sherri Says:

    “Please describe for others what you chose to do, and what you learned about that from Dr. Cree at UCSF Multiple Sclerosis Clinic or from other advocacy groups.”

    I’m not sure if I understand your question, so I’ll try to answer this as best as I can. If you have additional questions, feel free to ask.

    I learned about LDN through my husband. He was the one who spent hours – if not days – searching for an alternative to Tysabri. He feared everyday he woke up this would be “the day” I would get progressive multifocal leukoencephalopathy (PML), a deadly brain infection. The longer one is on the IV medication, the greater the chances of contacting PML. My immune system was so compromised over the 20 months I was on the drug, that I would have recurrent bouts of respiratory infections, sinus infections, laryngitis and even pneumonia. He and I were both scared, although at the time he never confessed just how worried he was (he told me how he felt after I was off the medication).

    He read me testimonials from MS patients. It seemed pretty amazing that people who used LDN didn’t experience any relapses with their disease. I heard over and over how fatigue lessened and other aspects of the disease improved or remained the same. He visited the website, http://www.lowdosenaltrexone.org, for most of the information. This is where he read about Dr. Bihari and dosing. He and I both decided this was something I wanted to try. My husband did the research because of my cognitive issues and my eyesight, by the way.

    I had an appointment scheduled with my neurologist the first week of May. We discussed LDN with her. She knew all about it and said she didn’t mind prescribing it for me. She believed it would help my fatigue and even stated it would be better than Provigil. She wrote me a prescription for 3mg and faxed it to the compounding pharmacy my husband had found on the LDN site. I was still on Tysabri at that time.

    When I went into her office in May I had a sinus infection. Two weeks later when I was scheduled for another infusion, I called my neurologist (barely able to talk) and asked to stop Tysabri. She agreed. I have to say that was the scariest moment of my life! I didn’t know if I would suffer from the rebound effect of going off the medication or not.

    Within a month of starting LDN, I signed up for as many LDN groups as I could find on Yahoo and Facebook. I wanted to hear how others were doing on the medication. I read so many uplifting stories and comments. They really gave me hope and reaffirmed I did the right thing. A lot of questions are asked about side effects and dosing on all of these sites. I’ve learned that one-size-fits-all dosing of 4.5mg does not work for many. There are factors that play into that: body composition, tolerance, etc. I’ve also learned that LDN is not a stand-alone treatment. One must consider changing diet, too. I am now following a Candida diet, and it really has helped. There are so many things I’ve learned that I couldn’t possibly list them all here.

    As far as Dr. Cree’s study at UCSF, one thing that shocked me was this statement,” Indeed, there is a misconception among some MS patients that LDN is incompatible with interferon usage and the present study did not find evidence of such antagonism.” This is the opposite of what I have been told. I know that LDN can be used concurrently with Copaxone, but not interferons. I have mixed feelings. Interferons are immunosuppressants and LDN is an immune modulator. I would think the two would counteract any effects. What is your thought on that?

    I believe LDN should be classified as an effective MS treatment and I also believe it should be a first-line treatment for those who are newly diagnosed with the disease.

    “Did you have spasticity and, if so, did it become worse?”

    I have a lot of spasticity. I take 30mg of Baclofen TID. After starting the LDN, I really didn’t notice a change. Over the past couple of months I have noticed an increase, though. Mostly it is at night and they are in my feet. I have to get up out of bed and stand on them for a few seconds before the muscles start to relax. This happens several times a night. I started acupuncture in December to help with the muscle spasms and the pain. I’m getting a little relief from that. I’ve also started taking my magnesium supplement at night instead of during the morning. I really hate to increase the Baclofen because of the sedating factor. I’m already taking the maximum dosage of neurontin.

    • Nancy Sajben MD Says:

      Sherri, thank you again for your details. I learn so much from patients and from those who have tried a medication for their medical problem. I agree LDN should be used as a first line treatment and I would dearly like to see large multi-center studies done on it.

      I asked an expert, Dr. Ian Zagon, the question about using LDN with other MS disease modifying drugs. He was very kind to respond. Due to the importance of his guidance, I have posted it separately, May 16, 2010, because it may otherwise be overlooked.

    • Nancy Sajben MD Says:

      Persons with MS are much more sensitive to dosage than any others. Of interest, I have seen it markedly improve spasticity in a man who had spinal cord damage with hemispasticity from a herniated cervical disc. He was on a dose of 9 mg daily.

  5. pam sciurba Says:

    Oh I also forgot to mention, I DO have Fibromyalgia, and had that for 10 years now. HOWEVER Doc., the pain I NOW suffer from (from injections of prolotherapy!) is a TOTALLY DIFFERENT pain then I had with Fibro. That is miniscual compared to this back and butt pain I now have…..24 hrs./7 xx 5 years now!!
    I’m sorry but this is part of my earlier reply. Thank You for listening…
    Pam in St. Charles Illinois

  6. Darrin Todd Says:

    I was diagnosed with MS in February, 2008 after a severe surprise attack that left me unable to walk well, speak, feel my face and contain my bodily functions. Heat would cause me to short-circuit and I was forced to take cold showers. The original MRI showed 26 scars, some of which were quite large. My neuro immediately fixed me up with a massive dose of steroids…and a CRAB drug (Copaxone). -Like I was on an assembly line. “Oh, you’ve MS? Here you go.” Over the next two months, I sufferered severe setbacks. The only thing my neuro could offere was another dose of steroids. Reading about the efficacy of Copaxone didn’t allay my fears that I’d be a paraplegic within five years. Luckily as an advanced doctoral student, I was an adequate Internet researcher and came across LDN. I studied it and other alternatives. Trying to cover all bases, I devised a trifecta of Copaxone, LDN and a modified Swank diet. Though the evidence was often anecdotal, it was also quite compelling and intriguing. I also started taking many vitamins. My neuro scoffed at my treatment plan, but after 18 months, there is no residiual or new scarring on my MRIs. I am happy that I didn’t just accept the ‘standard treatment’, instead choosing to find my own treatment. I credit the LDN for the most part for my success and consider all else to be a ‘backup’. I am climbing Mt. Rainier next week and have no concerns that my MS will affect my ability to scale that mountain. Though my story is anecdotal and possibly atypical, I cannot recommend LDN enough to MS patients. I believe it should be high on the list of drugs to try upon diagnosis. To me, one attack is one attack too many…


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