A Canterbury man suffering from multiple sclerosis (MS) may get a second chance at a normal life after he receives an “experimental” treatment in Russia.
Rangiora resident Royce Brewer flew to Russia on February 5 to undergo hematopoietic stem cell transplantation (HSCT), where doctors remove healthy cells from his body before chemotherapy clears out the disease.
Wiping out the disease will also wipe out his immune system, and he will have to spend three months in isolation while healthy cells are placed back into his body.
It will be two years before his immune system is back to anything like it used to be.
“At certain phases it’ll feel like all his symptoms are rushing back and are worse than what they were, and then he’ll slowly crawl out of that,” Brewer’s wife, Gabby, said.
There was a positive side to the intense process – “every time he crawls out of those downs he’ll reach a new high”.
If successful, the treatment would completely halt the progression of Royce’s MS, and it was possible his immune system could slowly start to regenerate without any trace of the disease.
The cells that had been damaged would remain so, but those yet to be affected by the disease would be saved.
Australian nurse Kristy Cruise was diagnosed with MS in 2013 and booked herself in to receive HSCT in Russia within four months.
Her treatment was successful and she became an advocate for HSCT, appearing on major Australian networks and having her story told on 60 Minutes.
She became somewhat of a beacon of hope for many. HerFacebook page, which had more than 25,000 followers, documented the stories of many in the Australian MS community, more than 300 of which were “doing exceptionally well” after their stem cell transplants, she said.
The Brewers met Cruise at an Auckland conference in 2014 and began investigating whether her solution could work for Royce Brewer.
Kristy Cruise said her MS was in “complete remission”.
“I have not felt this good in years, and no longer rely on walking devices or wheelchairs at the mall.”
Cruise said the first six months after the HSCT treatment was “all about recovery”.
“You have a very limited immune system and are virtually unvaccinated, so the priority is good infection control, rest, gentle rehabilitation, and good nutrition.”
A spokesperson for Multiple Sclerosis New Zealand (MSNZ) said stem cell treatment, such as HSCT, “looks exciting”, but it was “still experimental and there are significant risks”.
“MSNZ advise that Stem Cell Treatments should only be done in established centres that strictly adhere to the international guidelines and preferably done in the context of a clinical trial where benefits can be measured and patients closely monitored for adverse outcomes.”
Gabby Brewer had raised about $80,000 to fund her husband’s treatment, but still needed about $24,000 for a special hyperbaric oxygen chamber to help speed up his recovery.
“It’s to make the most of the treatment and get the best result possible for recovery and, of course, our never-ending fear is that we never want him to get MS again . . . [but] because it’s not a medical device, the medical institutes are like ‘no, no, no, you can’t use these chambers for that type of thing’.”
Ministry of Health chief medical officer Don Mackie said HSCT was “an experimental treatment” that the ministry had been watching with interest.
HSCT was offered in New Zealand for some cancers, but was “not offered or supported” for auto-immune diseases such as MS.
“The ministry’s advice to any New Zealander seeking any treatment overseas is to talk to their own doctor first. If an individual chooses to go ahead with the treatment, continuity of care and post-procedural follow-up are very important,” Mackie said.