Lake of the Pines woman finds pain relief from MS with experimental drug

There is no published data from clinical trials

By: Michelle Miller, Journal Staff Writer
Sunday, April 30, 2006

Lake of the Pines resident Vicki Finlayson has MS and has found one little pill that brings her relief: Low Dose Naltrexone. Photo by BEN FURTADO/Auburn Journal

Vicki Finlayson has recently started approaching strangers in wheelchairs at Chinese restaurants, grocery stores, or anywhere else to ask them if they have multiple sclerosis - a terrifying neurological disease that can affect one's ability to walk.

Sometimes they do, so Finlayson, 50, shares a bit of wisdom on what's helped her cope with MS: Low Dose Naltrexone.

The Lake of the Pines woman also totes around her "LDN bag" - heavy with packets of information on the drug she can hand out to any curious soul.

Low Dose Naltrexone is not widely prescribed for the treatment of MS. Many doctors will not prescribe it because no published data exists from clinical trials on LDN in MS.

But for five months, Finlayson has found relief from her multiple sclerosis symptoms with LDN after a journey that took her to the depths of pain and suffering.

An avid country western dancer, Finlayson was just taking up golf when she first felt vague pain and numbness in her limbs 10 years ago.

The symptoms progressed and Finlayson was diagnosed with progressive relapsing MS in 1998. Her body was covered in bruises from bumping into walls. She had whole body spasms that would come on in an instant. It hurt to wear her Levis because of her sensitivity.

When she was diagnosed, she was presented with one group of drugs to cope with the symptoms, the so-called CRAB drugs (Copaxin, Rebiff, Avonex and Betaseron).

But the side-effects made her sick and miserable.

She spent so much time in pain and crying on her green-striped couch that she vowed to trash it once she got better.

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"I would be eating dinner and put down my fork and go to the couch and cry because I couldn't get any relief," said Finlayson, a stay-at-home mother of one daughter, now 26. Her drugs, some costing her $400 a month, couldn't control the pain, so she was using Morphine patches, steroid infusions, eight 10mg Vicodin pills a day and oxycontin - a drug given to cancer patients when they're dying.

"I was an active person but I was in so much pain. I couldn't use my left hand. Once you get to that point, you'll try anything," she said of her treatments. "I got to the point where if I went to bed and never woke up, I had made peace with that."

After her husband Steven did extensive research on Internet, he found Dr. Bernard Bihari, who agreed to write her a prescription for Low Dose Naltrexone.

She started taking one LDN pill at bed each night. Three days letter, she felt better. There's still pain, but no more spasms.

There's been no clinical trial to study LDN in MS. At higher doses, it is FDA-approved to treat alcohol and drug dependency.

"Further study is needed to determine the safety and efficacy of LDN as a treatment for people with MS," according to a statement from the National Multiple Sclerosis Society.

If money could be raised to conduct research, maybe more doctors will see its benefits, Finlayson said. She is organizing a fund-raiser this fall to do just that.

But for now, she's spreading the word herself on what LDN has done for her life.

"I encourage people to do their homework and read about it because it's something I feel could work," Finlayson said. "It doesn't help everybody and it's not like you'll be able to walk the next day, but it's something a lot of people have found relief with." The Journal's Michelle Miller can be reached at michellem@goldcountrymedia.com.