Leslie Levine’s searing pains started the day after Thanksgiving in 2006. They began in her toes, which turned strangely dark. Then the agony crept upward.” It felt like my legs were being dipped in simmering petroleum 24/7 ,” she said.
The emergency room and a series of physicians could do little but scratch their heads and offer her painkillers.
” I was living on oxycodone and very grateful for it ,” Levine said, then Harvard University’s chief patent attorney. But it wasn’t enough.” By January, I was on disability, because I was in such pain and could hardly stroll .”
Her internet search for answers resulted her to Dr. Anne Louise Oaklander, a neurologist at Massachusetts General Hospital, who was then developing a hypothesis about inexplicable pain disorders like Levine’s: What if they were caused by an overactive immune system?
Oaklander treated Levine as if that were the lawsuit and the pain–thankfully–disappeared within five days.” I didn’t know how I was going to live with that level of pain ,” Levine said, adding that it returns every time she stops treatment.
Now, Oaklander has published a series of 55 case reports including Levine’s, suggesting that a number of people who suffer pain or other neurologic symptoms–which may have been diagnosed as fibromyalgia, chronic fatigue syndrome, mental illness, or a host of other problems.
Oaklander thinks that some percentage of people who have small fiber neuropathy–which can be caused by diabetes, chemotherapy, or other toxins–actually have a previously undiagnosed autoimmune problem.
Although it’s too soon to say how many people might be affected by this autoimmune-related small-fiber polyneuropathy, nearly 50 million Americans complain of regular or chronic ache. If even a fraction of them could be effectively treated with autoimmune therapies rather than high-dose analgesics, they may get better relief without risking an opioid addiction, said Oaklander, “whos also” an associate professor of neurology, at Harvard Medical School.
” This is not just some rare, esoteric cancer that Harvard eggheads are investigating ,” she told.” It is common. People–including children and teens–are sick, but they don’t know what they have and their doctors don’t know, either .”
Small-fiber polyneuropathy, in which nerves misfire, is common among people with diabetes or who have been treated with chemotherapy. But in roughly half the patients who suffer the same pain, numbness, or rub, there isn’t any obvious cause.
The same tiny nerves also line the intestine, Oaklander said, so people with this condition can have gastrointestinal symptoms, such as nausea or vomiting when they try to eat–which often get misdiagnosed as an eating disorder. Even fainting when standing up or difficulty getting out of bed can be caused by damage to these small nerve cells, she said.
In Oaklander’s study, 55 largely female patients all had objective measures of damage to small-fiber peripheral nerve cells and no diabetes or other known cause of neuropathy.
All were treated with intravenous immunoglobulin or IVIg, a therapy effectively used against other autoimmune-related nerve conditions. The case review showed that 77 percentage of the patients responded to IVIg, with their pain falling on average from 6.3 to 5.2 on a 10 -point scale. Their internal organ function also improved.
It’s still too soon to declare that Oaklander’s detected a new condition, and certainly no one recommends starting autoimmune therapy for anyone with unexplained pains.
But Marinos Dalakas, director of the Neuromuscular Division at Thomas Jefferson University in Philadelphia, says her results are persuading enough to encourage him to exam some of his pain patients for markers of autoimmune disease. If he found such signs, Dalakas said he would try them for three months on a therapy like IVIg to see if their symptoms improve.
To definitively prove that IVIg is effective for appropriately selected patients, person would have to conduct two, big, expensive clinical trials, likely to take 5-10 years. Oaklander has already applied to the National Institute of Health for a research grant to prepare for one such trial.
Still, to have advanced the social sciences this far was ” courageous ,” one colleague said.
” It takes great courage to persist, to believe in your data, and to press on in the face of skeptics ,” Stephen Hauser, chairman of the neurology department at the University of California, San Francisco School of Medicine, told The Daily Beast.” I think the world is beginning to catch up to Anne Louise .”
Before changing his own medical practise, Hauser said he would want to see the results of a large, blinded trial, and confirmation that IVIg or the other autoimmune therapy offers pain patients a significant improvement in their quality of life.
” I do guess these patients represent a huge problem for the medical community for which better treatments are sorely required ,” Hauser added.
IVIg, which has side effects like nausea, headaches, and flu-like symptoms, must be delivered via infusion. And it’s pricey–costing $10,000 per monthly dose–because each dosage contains purified proteins from 5,000 -8, 000 blood donors who have been screened for infectious diseases, Hauser said.
The therapy runs, Oaklander said, because” it bamboozles the immune system ,” overwhelming it with harmless proteins to confuse it from attacking the nerves.
If an autoimmune condition persists untreated, continued attacks can leave permanent nerve injury, Oaklander told.” It’s really important that physicians acknowledge when neuropathy is autoimmune and dampen down the attack as soon as possible .” But that hadn’t previously been recommended.
She periodically dials back her patients’ IVIg to see if their nerves have mended enough to stop therapy. About 16 percent of the patients in the case review were able to wean off their IVIg without their symptoms returning.” If you can protect the nerves for a period and let them regrow, the autoimmune attack may die down ,” she said.
Oaklander said she hopes her new paper, published in the publication Therapeutic Advances in Neurological Disorders , will give patients some ammunition when they ask their insurance company to pay for autoimmune therapy.
Levine’s insurance company refused to pay for IVIg therapies for four years, insisting she take much less expensive steroids, instead. But the steroids didn’t help nearly as much and their side effect would land her in the hospital every few months, Levine told. Finally, realizing that IVIg would be cheaper, her insurer let her back on the treatments two years ago–and she’s been side-effect free since.
” I just had my monthly therapy this morning ,” Levine, who now operates a support group for people with neuropathy, said. “It’s changed my life.”
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