By Suzanne Laurentnews@seacoastonline.com

NEWMARKET Karen Olivier is excitedly looking forward to what she calls her stem cell birthday.

Olivier, 40, is traveling April 23 to Monterrey, Mexico, to undergo a procedure that will reset her immune system and stop the inflammation in her body, caused by her relapsing-remitting multiple sclerosis.

Diagnosed with MS at the age of 24, Olivier learned about a treatment called hematopoietic stem cell therapy, or HSCT, from a Facebook page. It gave her hope that if she had this treatment, it would stop the progression of the disease.

She began blogging about her journey leading up to her trip to Mexico.

I want others to know this is an option, she said.

According to the National Multiple Sclerosis Society, HSCT attempts to reboot the immune system, which is responsible for damaging the brain and spinal cord in MS. In HSCT, hematopoietic (blood cell-producing) stem cells are derived from the persons own bone marrow or blood, are collected and stored, and the rest of the individuals immune cells are depleted by chemotherapy.

The stored hematopoietic stem cells are then reintroduced to the body. The new stem cells migrate to the bone marrow and, over time, produce new white blood cells. Eventually they repopulate the body with immune cells, building a new immune system that doesnt know what MS is.

In early clinical trials, 78 percent of participants experienced no new disease activity after the procedure and did not need disease-modifying therapies to control their disease.

Olivier had been taking disease modifying drugs, or DMDs, for 15 years, starting with Avonex, a once weekly intramuscular injection. She then took Rebif, a subcutaneous injection three times a week. After she took a daily injection of Copaxone. In 2009, she started on Tysabri, receiving an infusion every 28 days.

I did well on the Tysabri, but in the past couple of years, my symptoms progressed and my most recent MRI showed new disease activity on my thoracic spine, Olivier said. At the rate my MS was progressing, I would probably be in a wheelchair in two years.

Since 1993, the Federal Drug Administration has approved DMDs to treat relapsing-remitting MS. All are designed to suppress the immune system to one degree or another. These drugs cost about $5,000 per month and they must be taken indefinitely, since relapses will occur if the drugs are stopped.

Oliviers insurance covered the cost of the drugs, but her copays and coinsurance amounts were still very high, she said. One month of a DMD infusion can cost between $7,000 and $9,000.

Olivier researched a clinical trial of HSCT in Chicago, a program begun in 1996 by Dr. Richard Burt, now chief of the division of medicine-immunology and autoimmune diseases at Northwestern Universitys Feinberg School of Medicine.

Trial criteria included relapsing-remitting MS, and failure on at least two DMDs and two flare-ups in the past 12 months, requiring treatment from steroids, she said.

In the United States, HSCT can cost between $150,000 and $200,000.

Insurance may have covered it out-of-network, but my plan has a substantial out-of-pocket maximum, Olivier said. It would have require multiple trips to Chicago for several years, and I could have ended up in the control group.

Olivier began to explore receiving HSCT in other countries and decided to apply for the treatment at Clinica Ruiz in Mexico last October when she was recovering from a flare-up. Clinica Ruiz is based in Pueblo, Mexico, but has expanded to a second clinic in Monterrey.

She and her husband, Jason, agreed spend the $54,500 out-of-pocket cost for the outpatient treatment that also includes transportation to and from a two-bedroom apartment where she will stay for 28 days. Her mother is traveling with her, as the treatment protocol requires the patient to have a caregiver present.

I was accepted based on my MS history and my expanded disability status scale (EDSS) score that basically measures how mobile you are, Olivier said.

Olivier will undergo two days of chemotherapy to wipe out her immune system. She will then have seven days of injections to promote stem cell growth, after which stem cells will be harvested from her blood.

Ill then have two more days of chemotherapy, she said. Im excited. No chemo, no cure.

May 7 will be what Olivier calls her stem cell birthday when she receives her stem cells back to reboot her immune system. She will then be in isolation in the apartment for about a week. Her mother will have to wear special precaution gear during that time.

Some people see improvements in the first three months, with full recovery in two years, Olivier said. Some might say Im not sick enough for this treatment, but the earlier someone gets it, the better, before the MS causes major damage.

She added that some people believe this is a risky procedure and it has not been FDA-approved yet in the United States.

But many people have died on Tysabri and the drug approved by the FDA last week, Ocrevus, has an increased risk of cancer after two to three years. I am hoping the HSCT will stop the progression of my MS, and hope that I never have to go on another DMD in my life.

To read Oliviers blog, visit knockoutmsblog.wordpress.com.

See more here:
Local woman heads to Mexico - Foster's Daily Democrat

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