My MS has been stable since my diagnosis in 2012. I do have lots of symptoms that makes life difficult. I am considering HSCT but I am not convinced. The forum where I am on, which is in Singapore, said one young lady passed away after her treatment. This was while she was back home due to complications. I know there is a 1% risk of death but as it just happened I feel the percentage could be higher. What are your thoughts on this? Wait till disability sets in, or get stem cell treatment before its too late??
Hematopoietic stem cell transplantation (HSCT) has been used in the treatment of very active MS patients for over 20 years. The current mortality rate for this procedure is 1 to 2 %. To put this mortality risk in perspective, the mortality rate associated with HSCT is probably 2.5 to 5 times the rate of dying from complications related to Tysabri in the most high risk patients (i.e. those with a history of prior immunosuppression, a JCV antibody index > 1.5 and a duration of therapy over 2 years). HSCT is considered experimental by the FDA (only relevant if you live in the USA) because of these potential risks, the lack of comparative efficacy and safety data (i.e. HSCT versus a highly active treatment like Alemtuzumab) and the lack of guidelines on selecting appropriate patients for treatment.
Without knowing anything about your illness it is very hard to provide you with individual advice except to say that HSCT is probably only indicated for those MS patients with a degree of risk factors and disease activity that places them in the worst 10 to 20% of patients. Please discuss this with those handling your medical treatment before making any decisions as our answers are for to be used for information purposes only.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego