Dr Ginevra Liptan’s Presentation on Fibromyalgia at the LDN 2017 Conference

 

Dr. Liptan is an internal medicine trained physician with fibromyalgia, and a practice devoted to fibromyalgia called the Frida Center for Fibromyalgia. She authored Fibro Manual, a fibromyalgia treatment guide. Dr. Liptan discusses this debilitating condition and the neurologic basis of the pain with fibromyalgia. Low dose naltrexone (LDN) lessens the brain sensitivity to pain and reduces the neuroinflammation in the brain. Medications such as anticonvulsants, pregabalin and gabapentin help treat fibromyalgia because they help decrease pain amplification, but do not address the root of the problem, in the glial cells. They also have side effects that cause issues. LDN does quiet glial activity, reduces release of inflammatory chemicals, and allows nerve cells to normalize the volume on pain signals. Two studies at Stanford University in the United States showed much reduced pain on LDN. Side effects of LDN such as headache, vivid dreams, insomnia or anxiety did not cause trial subjects to stop LDN, and were short-lived. In Dr. Liptan’s practice she finds about 2/3 of patients have dramatic improvement with LDN. She starts patients on 1.5 mg for 2 weeks, then increases to 3 mg for 2 weeks, and if patients are tolerating that, increases to 4.5 mg.

Many fibromyalgia patients take opiates for pain relief. As an opiate blocker, naltrexone’s use is limited in patients taking opiates.

Dr. Liptan’s patient, Brenda, is a very active 43 year old mother of twins who runs a restaurant with her husband. Her pain initially started with tearing pain in her right abdominal wall while bending over to pick up a shirt. A surgeon found and repaired a small hernia, but that did not resolve the intense right abdominal wall pain, and ultimately pain spread to her whole body and she experienced more fatigue. A local university clinic diagnosed her fibromyalgia and prescribed the usual medications. When Dr. Liptan saw her she worked on improving sleep quality, and muscle relaxants to help with some pain. She started on 1.5 mg LDN with some sleep disturbance and dizziness, which abated in a few days, and the dose was increased to 3 mg. The take-aways from this case are that it can take 2-3 months to see full benefit from LDN for fibromyalgia; and to modify the dose slowly, or not at all, to control side effects, individualized to the patient.

Another patient, Jessica, is a 37 year old city planner who is overweight, has severe joint hypermobility, which is quite common in fibromyalgia. She was diagnosed at age 30 and had tried several strategies, but none that helped her mid and low back pain. Her skin was extremely tender, common in fibromyalgia, and she couldn’t stand to wear a bra. After a month on LDN at 4.5 mg Jessica reported her back pain had reduced from 8 to 3 on a 10-point scale, and she could wear a bra comfortably. Reduction in tenderness is common with LDN for fibromyalgia.

Generally, up to 40% of fibromyalgia patients take opiates, but in Dr. Liptan’s specialty practice up to 60% of patients come to her on opiates. This limits the ability to prescribe LDN because in higher doses it is an opiate blocker. Using LDN to help with central sensitization gives glial cell modulation effects rather than opiate blocking. Naltrexone works on multiple different receptors in the body, including glial cells called toll like receptors, like TLR4, found on glial cells and other immune cells. LDN helps to sort of reset endorphins, the body’s natural opiate-like pain relievers.

If a patient on opiates takes LDN, an opiate block, might it cause withdrawal? In patients who chronically use opiates, particularly higher doses of opiates, there is glial cell activation, and they release inflammation and can actually worsen the pain. This is noted in studies of long-term pain or fibromyalgia management with opioids – they’re really not helpful. One study over a 4 year period in a rheumatology practice with fibromyalgia patients on daily opiates. Over time their symptoms worsened and their pain scores were the same, or a bit higher. Thus, opiates are not favored as a long term management option for chronic pain. Dr. Liptan’s clinical experience is that naltrexone dosages below 1 mg, so-called ultra-low dose naltrexone (ULDN), could benefit chronic pain, and allow its use along with less opiates, and less side effects.

Naltrexone is an opioid antagonist and blocker. A review article found that low doses of opioid blockers seem to reset opioid receptors and enhance analgesia, while overcoming prior opioid tolerance. Two studies showed that oxycodone combined with ULDN to treat osteoarthritis and low back pain gave better pain relief and lower side effects. Opiates and ULDN management is tricky. One patient who uses a patch that continuously secretes an amount of fentanyl into the body. Adding  0.5 mg naltrexone caused her to have nausea, sweating, and uncomfortable anxiety, and no benefit. So that was not a success and ULDN was stopped.

Another patient used 0.35 mg ULDN, acetaminophen, and hydrocodone as needed. She was instructed to separate her naltrexone dose from her opiate dose by at least 6 hours, and she had lower levels of pain and no side effects, no withdrawal. So the tip would be that around 0.3 mg to 0.35 mg naltrexone seems best tolerated in patients on opioids. There aren’t large studies on this, so it’s anecdotal evidence. And, separate opioid and naltrexone doses by at least 6 hours. Dr. Liptan has not found a way to combine ULDN with long-acting opiates like the fentanyl patch. The concern is inducing withdrawal symptoms. Perhaps using even lower doses of ULDN.

Dr. Liptan encourages others to understand the science of fibromyalgia, and recommends her book, The Fibro Manual, as a resource for patients and doctors. The image on the book is Frida Kahlo, a famous Mexican painter in the early 20th century who suffered from chronic pain her entire life. This self portrait with multiple nails piercing her body is an accurate description of how fibromyalgia can feel, the excessive tenderness and all over muscle pain.

Dr. Liptan also blogs at http://www.drliptan.com/

Summary from Dr. Ginevra Liptan from the LDN 2017 Conference, listen to the video for the show.

Thank you for listening to this presentation. All past conference presentations can be found on our website, https://ldnresearchtrust.org/

Keywords: fibromyalgia, pain, opiods, opiod receptors, glial cells, toll receptors, LDN, low dose naltrexone, ultra-low dose naltrexone, ULDN