Hope for treatment on autoimmune diseases

Hope for treatment on autoimmune diseases

Emmy Fitri, The Jakarta Post, Jakarta

Wiry Hendrik Kurnia was just eight years old when he first felt the pain in his Achilles tendon. The pain worsened each day until he could not walk at all.

Though not paralyzed, his tiny feet could not sustain his weight just to stand up. His lowest ebb was when his parents decided he could no longer go to school, because his classroom was up two flights of stairs.

His parents initially thought it was "just soreness after a fall."

Some traditional masseurs suggested that too, as did all the local doctors that were consulted. But their worry gradually grew when the pain did not stop after trips to hospitals and clinics and, of course, tens of millions of rupiah spent.

"A priest in Bogor even 'diagnosed' Hendrik with a kidney ailment. It was very confusing at that time as we did not know where to go or who to rely on."

They finally took him to Singapore, and Hendrik was sent to a Singaporean doctor who diagnosed him with rheumatic arthritis. "It was like a lightning bolt had hit us on the head, because we normally associate arthritis with elderly people. Hendrik was just 14 at the time," Hendrik's mother, Mei said.

"From that day on I began searching for everything I could find about rheumatic arthritis in books, magazines and the Internet. I was completely in the dark about the disease so I wanted to find out everything I could. And we tried all means to get Hendrik healed," the mother of four said.

"Like many parents, we wanted to see him grow up as a healthy person and lead a normal life like many boys of his age."

From a concerned friend, Mei was introduced to rheumatologist John Darmawan, who is based in Semarang, Central Java. The contact with Darmawan was made two years ago and Mei's family now makes frequent trips from their home in Jakarta to Semarang.

"We usually had to pay a porter at the airport to carry Hendrik because the Semarang airport is not wheelchair accessible," she lamented.

"He was able to walk for the most part, a year ago. Now he's only taking six kinds of pills (far less than previous prescriptions from doctors that had misdiagnosed him) and one of them is just a vitamin for his bones. Hopefully, it will work," Mei who resides in Kelapa Gading in North Jakarta explained on Friday.

Since meeting Darmawan, Mei has spent Rp 20 million for the treatment plus the medicine, an amount much smaller than what she paid to other local doctors, who obviously had failed in their diagnoses of Hendrik.

However, Hendrik is likely much luckier than many other people. Nobody knows for sure how many other people are suffering from the same problems -- and being misdiagnosed by local doctors. But those who have found Darmawan or one of the other 15 rheumatologists throughout this vast archipelago of more than 220 million people, can count themselves fortunate.

A World Health Organization expert on rheumatic diseases, Darmawan has introduced his treatment method, known as Stepdown Bridge Protocol of Intravenous and Oral Combination of 5 Immunosuppressants, to his patients from many parts of the country.

"It began in around 1993, and by 1996 after I observing the results of several combinations of medicine on patients with Lupus Nephrotic syndrome, I finally decided on the current method," Darmawan said.

Some foreign rheumatologists have also tried this method in their home countries. Bangladesh's Syed Atiqul Haq, Vietnam's Tran Thi Minh Hoa, China's Dongbao Zhao and Iran's Soosan G. Soroosh have all used Darmawan's method.

In the history of treatment of Lupus Nephritis and RF + Rheumatoid Arthritis, never before have such almost miraculous results been achieved, director of the Indonesian Rheumatic Center Remy Nasution, said.

"This is really a way to help the suffering of people in the third world where expensive medicine is still a big problem."

Remy said in Darmawan's protocol patients get intravenous infusions for two to four months, and can live normal lives with the aid of oral medicine after some six months, and totally cured after several years.

"In autoimmune disease, we call the healing period remission because the disease is not entirely cured as it will naturally come and strike again if there is a triggering factor. Similar to a flu. We cannot have the flu for the rest of our lives, although we have been recovered from one we had today," Darmawan explained.

"Therefore those who are in remission must live unstressful lifestyles with healthy diets," Darmawan added.

Although less costly -- because he uses generic drugs -- and for those who own health insurance (locally known as Askes), this method cannot be applied to treat all Lupus-related diseases. It has been tried on patients with Lupus Nephritis.

Darmawan acknowledged that some local doctors debated against his protocol, saying that there had not yet been definitive clinical testing to verify the method.

On this matter, a rheumatologist from the Netherlands, J.J. Rasker said,"Every new treatment will be challenged by those who have not tried it on. And every new treatment needs observation. Now, I believe, we're in the stage of observation."

"This method is promising because the drugs used are not new drugs. We all know the side effects, so this is not experimental. We just didn't know the precise combination until John (Darmawan) introduced it to us."

The breakthrough comprises several stages of remission, which are achieved in relatively short periods of time: -- Remission with intravenous therapy after 2 - 4 months when 24 hours urine micro-albumin is normalized (less than 30 mg percent). The leak of albumin through the kidney is welded by the intravenous Cyclophosphamide+Methylprednisolone+Methotrexate -- Remission with oral drugs after 5.5 - 7.5 months when the intravenous infusion is tapered off, remission is sustained with oral drugs for at least two years, before tapering off within one year. -- Remission without drugs after 3.5 - 4.4 years of therapy. -- Long-term remission with oral drugs and remission without drugs are sustained by immediate suppression of flares by re- institution with the Step-down Bridge Protocol of Intravenous and Oral Combination of 5 Immunosuppressants (SBP-5-IMNs).