About Nico

My name is Gerlinde Pecht and I am Nico’s mother. My son has been struggling with the symptoms of MS from the very beginning of his diagnosis at the age of 24. There were no real improvements during remissions and he became disabled early on. We still believe treatment with the approved DMDs had some kind of positive effect on his disease course, but his quality of life was greatly diminished by side effects and further progression.

My son took great pride in being independent and dealt with his limitations as good as he possibly could.

He is an outdoor enthusiast and he did not let MS stop him from being active. He was living in Truckee, CA, a little town close to Lake Tahoe. There is only one neurologist specializing in MS in Reno, NV about 45mi away. Unfortunately this neurologist was very conservative in treating my son. Nico had a hard time to get him to prescribe Tysabri as it became available, even it was very clear that the prescribed Interferons did nothing for him besides making him miserable. But his persistence paid off and the neurologist prescribed Tysabri in the end.

Nico did well on Tysabri and his progression seemed to slow down. But at the 2year mark his neuro  insisted that he stopped Tysabri and take a 6month break without any medication.

This led to a severe exacerbation about 3 month after stopping Tysabri and a MRI showed new enhancing lesions. Although he was allowed to restart Tysabri, his symptoms never went back to pre-relapse stage.

Nico was on Tysabri for about 6 years total and tested positive for JC antibody. In November of 2013 he finally stopped Tysabri and started Tecfidera a month later. Late in February of 2014 his symptoms worsened substantially. He was now not able to live on his own any more and had to move in with us in March. His neuro  refused to treat him with steroids to get this last attack under control.

After his move to San Diego we established a relationship with a new neurologist at Scripps Hospital. He suggested Rituximab as new treatment for Nico but was not able to prescribe the drug since it is not officially approved as treatment for MS.

He suggested to restart Tysabri again. Although I believe Tysabri is still the most effective drug my son has taken, but I was really concerned that Tysabri did not prevent him from progressing. His disability status was really frightening at that point and I felt something more radically needed to be done to stop him from progressing any further.

I found George Goss's blog about his HSCT treatment in Germany and the rest is history.