MS drug creator DeLack to speak at bookstores

When the medical establishment couldn’t fix Elaine DeLack, she found her own fix.

The 46-year-old registered nurse, who lives in western Washington, was diagnosed with the devastating autoimmune disease multiple sclerosis in 1988.

“My fatigue really had me debilitated,” DeLack said recently by phone. “It took me three hours to make a bed. I would just try and mow the lawn … and I’d have to lie down. I was used to being a ranch girl that went from sun up to sun down.”

Her left hand wouldn’t work. Her eyes couldn’t focus. Her speech was slurred and she had trouble thinking and finding the right words.

She suffered for years before she used her nursing background to start researching the disease. And much of her studying pointed her in the direction of histamine, a protein involved in allergic reactions, and its role in MS.

After much work, she developed Prokarin, a cream that combines histamine and a bit of caffeine. Once applied to a patch and placed on the skin, Prokarin eliminated all of DeLack’s MS symptoms.

DeLack details her work on Prokarin in “They Said It Didn’t Make ‘Cents’: MS, The Prokarin Story,” a recently self-published book.

“It’s like getting plugged back into life again,” she says. “I’m totally symptom-free, as long as I take it.”

Her fatigue – the most troubling symptom – dissipated after a few months. She no longer has any muscular or neurological problems, she says. To see her on the street, you would never know she has MS, she says.

But, she’s quick to say, “Obviously, it’s not a cure.” Once she stops applying the Prokarin patch, her symptoms return.

There’s just one problem with DeLack’s treatment: It hasn’t been approved by the Food and Drug Administration. That means that many insurers won’t pay the average of $200 a month for the cream. And, without FDA approval, many doctors are reluctant to sign off on the drug.

“I would recommend against using this medication,” says Dr. Roy Kanter, medical directory of Spokane’s Holy Family Multiple Sclerosis Center. “My concerns about this medication are just more in what we don’t know. We spend a lot of time and a lot of money and a lot of energy in this country trying to limit the effects of histamine on people.”

So far, about 7,000 MS patients have used Prokarin, DeLack says. The inventor receives a royalty of 80 cents for each dose purchased.

DeLack tested Prokarin on herself for a year and a half before giving it to anyone else, she says. She’s now been using it for eight straight years. The treatment has undergone one small study, which found it to be somewhat effective in treating MS-related fatigue.

She says she has heard no reports of adverse reactions to the medication, save for occasional itching under the patch.

DeLack says she has talked with three drug companies about taking on Prokarin. But, she says, it all comes down to money.

The big drug manufacturers already have poured millions and millions of dollars into researching and marketing their MS drugs. Adding a wonder drug like Prokarin to the mix would flush all of that expense down the drain, she says.

“Another drug that’s more effective would pull from your market,” she says.

Kanter, however, disagrees with that logic.

“If there was money to be made in this, the big drug companies would be trying to buy out her patent,” he says. “That’s my take on it.”

DeLack plans to keep working to get more funding to research Prokarin in the hope of winning FDA approval.

“I would just like to get somebody to start researching in this direction … Then we’d find a cure,” she says. “I want to cure the disease.”