12.12.2015

Naltrexone “changed life” of fibromyalgia patient

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My regular readers know I’m a big fan of using low dose naltrexone for fibromyalgia. I recently had the opportunity to write about LDN and how it’s becoming an emerging fibromyalgia treatment for Pain News Network. The story includes interviews with Jarred Younger, the researcher who conducted the first two LDN/fibromyalgia studies at Stanford University (more studies are on the way!), and Linda Elsegood, founder of the LDN Research Trust. I’m reprinting the story here with Pain News Network’s permission.

Low dose naltrexone is an emerging treatment for fibromyalgia. In early research studies, about 65 percent of patients experienced a significant reduction of symptoms.

The pain in Janice Hollander’s legs was so excruciating that she wanted to cut them off. Diagnosed with fibromyalgia in 2013, she’d progressed through the normal litany of prescription drugs doled out by physicians – Lyrica, Cymbalta, gabapentin, muscle relaxers and narcotics – all without finding relief.

Then she happened to catch an episode of the Dr. Oz Show where a guest discussed using low-dose naltrexone (LDN) as a treatment for chronic pain. A few days later, she convinced her doctor to write a prescription and took her first dose of LDN.Low dose naltrexone is an emerging treatment for fibromyalgia. In early research studies, about 65 percent of patients experienced a substantial decrease in symptoms.

“After about seven days, my pain lessened,” said Hollander of Michigan. “It lessened by 10 or 20 percent. That was huge! Even just that little bit of lessening was huge.”

After four weeks, the depression that had been stymying her for years lifted. At six weeks, she saw a noticeable increase in her energy levels. Her brain fog improved, and her memory returned.

Hollander has been taking LDN for about year now, and she’s probably one of its biggest fans within the fibromyalgia community. She regularly shares her success story in online support groups.

“I would say my leg pain is pretty much gone,” she said. “[LDN] has completely changed my life. I don’t know that I would be here today if it wasn’t for it. I don’t think I could go for another year in the misery I was in.”

Hollander still has fibromyalgia symptoms, but they are more manageable thanks to LDN.

A growing number of fibromyalgia sufferers like Hollander are finding relief using LDN. It’s an unusual discovery since LDN is best known in the addiction treatment community. The U.S. Food and Drug Administration approved LDN to treat addiction to certain opiate drugs in 1984.

Dr. Jarred Younger, who conducted two LDN/fibromyalgia studies at Stanford University, believes LDN has an anti-inflammatory effect on the brain.

“This is one of the few drugs that can do that in the brain because it crosses the blood-brain barrier,” Younger said.

In simple terms, the brain contains microglial cells that look for problems within the central nervous system. When they discover an abnormality, these cells release chemicals into the body that cause fatigue, pain, cognitive disturbances and other symptoms common among fibromyalgia patients. In a healthy person, these chemicals are intended to slow down the body, to force it to rest, so that it can heal from whatever has caused the abnormality. In fibromyalgia, some researchers hypothesize this normal central nervous system response gets activated and doesn’t shut off.

“It’s like the central nervous system thinks you have an infection when you don’t,” Younger explained.

Fibromyalgia sufferers often speculate about what caused their condition, and researchers have debated various triggers for years. Viruses (herpes, Epstein Barr, etc.), chronic stress, genetics, obesity, aging and pollution are suspects, but according to Younger, it could be all of these.

He believes LDN works because it calms the microglial cells and reduces brain inflammation.

Penn State University researcher Ian Zagon posits a different mechanism behind LDN. Zagon’s opioid blockade hypothesis surmises that LDN blocks the brain’s opioid receptors, essentially tricking the body into increasing production of natural pain-suppressing chemicals.

Theoretically, both hypotheses could be correct.

Younger’s two Stanford University studies showed LDN outperformed Lyrica, Cymbalta and Savella, the three drugs currently approved to treat fibromyalgia in the U.S., and it did so with minimal side effects. The most common side effects are headache, insomnia, vivid dreams and nausea – all of which usually disappear over time.

“Probably 65 percent of people get an appreciable decrease of symptoms,” Younger said.

But more research is needed to confirm these early findings.

Next year, Younger will conduct at least two LDN/fibromyalgia studies at his new facility, the Neuroinflammation, Pain and Fatigue Lab at the University of Alabama at Birmingham.

One study will try to parse out the most effective dose of LDN for fibromyalgia. Most LDN users are prescribed the drug off-label, between 1.5mg and 4.5mg daily. But some rheumatologists have shared anecdotal accounts that certain patients respond better to higher doses, ranging up to 9mg.

A second trial will pair LDN with dextromethorphan, a common cough suppressant that’s believed to work similarly to LDN.

But many fibromyalgia sufferers aren’t waiting for the research. They’ve found ways to secure a prescription and try LDN for themselves.

Linda Elsegood, founder of the U.K.-based LDN Research Trust, has helped thousands of people gain access to LDN. She credits LDN with stabilizing her multiple sclerosis. At her worst, Elsegood was wheelchair bound, had no control of her bowels or bladder and had lost much of her sight and hearing. After 18 months on LDN, she was able to walk again on her own and had a reversal of most of her symptoms.

After her remarkable recovery, she wanted to educate others on the benefits of LDN.

I wanted people to know that there is a choice, if you’ve been told, like me, that there’s nothing else that can be done for you,” she said. “Look into LDN. Do your research. … It is amazing the number of people who’ve found LDN works for them for so many different conditions.”

In addition to fibromyalgia, early research has found LDN to be useful in reducing the symptoms of certain autoimmune and central nervous system conditions, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.

But few doctors know about LDN as an emerging treatment, so it can be difficult to get a prescription.

“Some doctors are too busy to read the information,” Elsegood explained. “Some will not think outside of the box. It’s not what they learned in medical school, so they’re not prepared to consider something that is alternative. Other doctors won’t prescribe it because there aren’t enough trials.”

Unfortunately, it’s unlikely that any of the major drug companies will ever study LDN because it’s an older, generic drug and little profit can be made from it. So it falls to innovative researchers, like Younger, who secure donations and grants to fund trials.

Patients often encounter doctors who refuse to prescribe LDN even though it has a proven safety record and a low risk of side effects. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website. For those who can’t find an LDN-friendly doctor locally, there are physicians who offer phone and online LDN consults.

“My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.

“I would drive to Florida to get it if I had to. It makes that big of a difference. I just wish more doctors would prescribe it, and more people would find help with it.”

For a list of helpful LDN resources, visit www.fedupwithfatigue.com/low-dose-naltrexone.

Looking for other emerging treatments for fibromyalgia? Then you might enjoy these links:

Need energy? Why D-ribose may become your next favorite supplement

What you need to know about CBD oil and fibromyalgia

How to use medical marijuana without getting high

I think I’m getting better (and here’s how I’m doing it)

My own story of using low dose naltrexone for fibromyalgia

How going gluten free may help with fibromyalgia

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Comments

  1. maureen says:

    Hi…is it just me, I can’t seem to print the article, so that I can take it to my doctor? Any help or advice please. I am enjoying the newsletter…..it has been very helpful.

    • Donna Gregory/FedUpwithFatigue.com says:

      Sorry you’re having an issue w/ the printing plugin. I will make a copy of the article and email it to you.

  2. Sharon Bevins says:

    Can you take Naltrexone with Lyrica? I have been taking Lyrica since it was introduced,I ‘m certain I am addicted to it.I have tried to come off twice with bad results both times ,shivering with goosebumps but your burning up,so weak it put me in bed for 5-7 days I couldn’t fight any longer so I gave up and started it again,within hours I would start to feel ” normal “. I tried to go off because of prohibiting cost .I’m on Medicare and get in “dough-nut hole in June.I was diagnosed with Fibromyalgia in ’96,it has been a long, hard road,at one time I lost the will to live and I had a wonderful pc dr.I’m 68 now so there are other issues of being elderly.I cherish each good day and try to work through the bad and hold on to tight Thanks for this website and all of your insight

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, you can take LDN w/ Lyrica. Some people find that once they’re on LDN, they are able to get off of their other drugs or reduce the dosage. I have heard of people going through withdrawals from Lyrica and Cymbalta. It sounds like you will need to work w/ a good physician to help you wean off over time. I know some people are taking several months to wean off to minimize side effects as much as possible.

  3. There is hope for those suffering with CFS/ ME/ Lupus – in fact all Auto-Immune diseases.
    I have been a suffer and as a Professional Nurse have worked with a doctor in this field for the past 20 years in KZN & JHB. Have seen many life changing successes. Check out the following web site including a book written for suffers and the public battling to cope day to day stresses which are depleting their immune system.
    http://www.chronicfatiguesyndrome.co.za/

  4. Judy Brock says:

    I am currently on Cymbalta. Can I take Naltrexone while I am still taking the Cymbalta? I ask because I started to wean my self off the Cymbalta, with my doctors knowledge and permission. She did stress that I “wean” myself off slowly so the side effects would not be so bad. After about month I was not taking my bedtime dose on Wednesday and Sunday, but was still taking the morning dose. My doctor and I decided to split my dose as I was having trouble getting to sleep, and she said that Cymbalta effected some people that way. I was also trying to wean off the Amitriptylin at the same time. After one month I was getting pretty depressed and anxious again. I have gone back on the full doses of both medications and have taken up nicotine again – I use the vapor, but I have not gone back to smoking. I still find myself quite anxious, and I hate to leave my home, even though I enjoy being out and about once I do go. After reading about how some have been helped so much on the naltrexone, I think I would like to try it, but if I can’t take my regular meds at least at first, I’m not sure I could do it, after seeing the results I got when I only stopped a few doses. My pain has been debilitating this Winter, and this is the first time since I started on the Cymbalta, that I have been this bad.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Judy, yes, there are people who continue to take Cymbalta and other antidepressants while on LDN. Narcotics are the only drug category that’s not recommended. I’ve written quite a bit about Cymbalta’s withdrawal symptoms on my blog. I am not a medical professional, but I know that a lot of people are weaning off of it by opening the capsules and counting the beads. (Yes, it’s tedious, but it allows for even dosing each day.) Some people just aren’t able to skip doses. If you’re on facebook, you might want to join the Cymbalta Hurts Worse group – there are members there who are very knowledgeable about quitting Cymbalta. A lot of people on there are taking months to wean off to minimize side effects. Hope this helps!

  5. That’s very misleading… You don’t really want to encourage people to go to their GP’s asking for Naltrexone, it’s Low Dose Naltrexone. What you’ve written is confusing.

    • Donna Gregory/FedUpwithFatigue.com says:

      It’s not misleading at all. I used the term “LDN” or “low dose naltrexone” throughout the article. I only used naltrexone when addressing the reader in my comment. Not sure what’s confusing.

      • “Naltrexone changed my life”

      • Patti says:

        How are people paying for this drug? I just got off the phone with the only compound pharmacist in town and he says it goes for 500$ a month and insurance doesn’t cover it!

        • Donna Gregory/FedUpwithFatigue.com says:

          I’m not sure why your pharmacist would be charging that. First, naltrexone is a generic drug from the 1980s – the 50mg tablets are super cheap! My prescription for compounded LDN costs around $25 a month. I think that’s pretty typical from what I’ve read from others. I get mine from Skip’s Pharmacy in Florida. They ship all over the country. Hope this helps.

        • megan says:

          thats totally incorrect, call skips pharmacy in Fl its like 90 for 3 months. A

          • Donna Gregory/FedUpwithFatigue.com says:

            I use Skip’s for my LDN. It’s even cheaper for me … around $60 for 3 months.

  6. Moica says:

    I take 50mg. a day of naltrexone for alcohol cravings. I was started on it at the same time as I was titration g up to 3200mg. Of gabapentin a day for my fibro pain. I have attributed my pain relief and increased energy and mobility to the gabapentin but now I’m wondering. Any info on how higher doses of naltrexone affect fibro?

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m sorry, but I haven’t read any data re: fibro patients using 50mg of naltrexone, but what you’re saying does make sense.

  7. Augur Kythe says:

    ““My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.”

    IF you ask your doctor, they write “drug seeking behavior”

    IF you change doctors to get it, you are labelled as “doctor shopping”

    You might want to stop telling “patients” to “ask their doctor” or “change doctors” because it just hurts the patients…

    • Donna Gregory/FedUpwithFatigue.com says:

      LDN is not a opioid. There is no reason for a doctor to label a patient as “drug seeking” or as a “doctor shopper” if they ask about trying naltrexone. It’s no different than asking if you could try Lyrica or Cymbalta or any other “normal” fibro drug.

      • Psyqued says:

        This isn’t a “normal” fibro drug. It’s an opioid antagonist that is used to treat opioid and alcohol dependence. Long term use can change your sensitivity to opioids, and it’s not a pain medication.

        • Donna Gregory/FedUpwithFatigue.com says:

          All drugs come with risks. It’s up to us to do our research, balance the rewards and costs, and make a decision for ourselves.

        • NovemberNix says:

          Nope! It’s also for weight loss now!

    • megan says:

      why is dr shopping wrong? this is such bogus advice!
      If a dr wont listen or her you then damn straight find one that will. Your kind of thinking is very dangerous and will keep someone or yourself sick

      • NovemberNix says:

        It’s not wrong if you just tell the doctor that you’re looking for a PCP that “fits” for you, a doctor who really understands all we go through and someone you can build a rapport with, and trust. We don’t have to just settle for whoever they give us to. One doctor, who I’m told is a “chronic pain doc” told me the first time she sat down, “I can’t find anything wrong with you” WOW, nice to meet you?? Then she said, “Fibromyalgia isn’t real, everyone has it, I have it too!” Are you shi–ing me!!!! I was livid. She wouldn’t even refill my Tramadol I’ve been on for about 9 years, not even to ween off of it!! So I said I’d go to the ER and then she got scared or something and said, “don’t go to the ER, they won’t give you pain meds” (SO many words for her!!!! Uggggg!!) Right? 🙂

  8. Great info! I’m going to check into it with my doctor, Donna.

    Happy New Year!
    Sue

    • Donna Gregory/FedUpwithFatigue.com says:

      Happy to help! Let me know if you have any questions or need info to print off to take to your doctor. I can point you in the right direction!

      • Judy Misbach says:

        Hi Donna. Thank you so much for all your helpful information. I have been interested in the LDN but i have been on oxycodone for a # of years following cancer. I’m under the supervision of my oncologist. The oxycodone really helps me now with more than one pain source. Oh, and it’s the only med that helps my RLS. I’m wondering if LDN Is compatible? Thank you. Judy Misbach
        I’m wondering if I did this correctly.

        • Donna Gregory/FedUpwithFatigue.com says:

          Hi Judy, LDN is not a narcotic. It actually blocks narcotics from working. Some believe it stimulates the body’s own pain relieving mechanisms.

          • Psyqued says:

            “Some believe”……? Basically it means that there is no clear information regarding the mechanism at work in terms of treating pain.

          • Donna Gregory/FedUpwithFatigue.com says:

            Fibro research isn’t very evolved at this point. It’s just been in the past couple of years that researchers have finally figured out that fibro is tied to a malfunction w/in the brain and central nervous system. Prior to that, they thought the problem centered in the muscles.

        • You can not take any opiate at all when on naltrexone! You’re body needs to be free from opiates for 10-14 days before starting naltrexone. Starting while you have them in your system will make you very sick. You’ll experience instant severe withdrawal symptoms immediately.

          • Not sure if that’s true. I’m currently on Suboxone, which is a combination of an opioid and naloxone. It works great for my Fibromyalgia, but finding a doctor to prescribe it is difficult, because It is used to wean people off of opioids.

      • Beck brooks says:

        Thank you for sharing. I could sure use something to print to take to my next appt.
        Any contraindications around kidney function?
        Beck

        Oldhippichic@gmail.com

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