Adverse Drug Events with Tysabri

Before HSCT stopped my MS, I was failed by the drug Tysabri. This week I received a letter in the mail from the MS neurologist I no longer see. He wants to include my medical data as part of "a multi-center, retrospective, observational study evaluating real-world clinical outcomes in relapsing-remitting multiple sclerosis patients who transition from Tysabri (natalizumab) to Tecfidera (demethyl fumarate)."

Since doing HSCT with Dr. Burt, I no longer need MS drugs or my old neurologist anymore. But I am giving permission to use my old Tysabri data. I understand most MS patients don't yet have the opportunity I had to do HSCT. Patients and their doctors will need the best information possible for their drug decisions. I sincerely hope the study can help prevent other patients from experiencing the kind of botched treatment that crippled me with a horrific Tysabri rebound attack. I'm still rehabbing my ability to walk normally as the damaged nerves slowly heal.

I also hope the study isn't used out of context in order to promote Tysabri as the most effective treatment for MS. As new information is revealed, evidence is building that though Tysabri has some powerful activity against MS, it's buying time at best, or a deal with the devil of adverse drug events at worst.

Adverse Events 
Other than a few hundred people who have died specifically from the rare brain infection PML, brought on Tysabri use, we're left to guess about other adverse events with Tysabri. A new online data mining application shows 97,873 adverse events with Tysabri since 2005. (ADDENDUM: AS OF DECEMBER 30, 2014, THE NUMBER OF REPORTED ADVERSE EVENTS WITH TYSABRI HAS INCREASED TO 109,447.) My personal adverse event with the drug was severe, but is likely not included among the thousands in the database. I have no idea how many unreported others there are like me.  This chart shows those that have been reported.

As many thousands of patients continue to be infused with Tysabri around the world, researchers are still trying to figure out how it works at the molecular level. I'm no doctor or immunologist; the components of the human immune system are Greek to me. But the more I learn, the more it seems most doctors, particularly drug-prescribing neurologists, really don't know how the immune system works either. From research papers I find online, the best I can figure is that B cells and T cells of the immune system become imbalanced on Tysabri, which offers an uncertain mix of benefits and risks while treating MS.

Perhaps the most telling thing is that Lawrence Steinman, the Stanford immunology researcher  who invented Tysabri, says that the benefits of Tysabri are not worth the risk. He advises patients and doctors to consider other treatment options. I wish I'd known about Dr. Steinman before I'd trusted my neurologist when he told me Tysabri risk was manageable.