Epub ahead of print: Min et al. Development of extensive brain lesions following fingolimod (FTY720) treatment in a patient with neuromyelitis optica spectrum disorder. Mult Scler. 2011 Dec 6.
This is a case report of a subject who developed extensive brain lesions during fingolimod (FTY720) treatment in the TRANSFORMS study. His initial diagnosis was MS, but after developing an encephalopathy (confusion with clouding of conciousness) and the detection of anti-aquaporin4 antibody (anti-AQP4 Ab), the diagnosis was changed to neuromyelitis optica (NMO) spectrum disorder. After treatment with fingolimod, he developed bilateral extensive brain lesions. The brain MRI showed lesions predominantly involving the right frontal and parietal lobes, with swelling (vasogenic edema) and enhancement (breakdown of the blood-brain-barrier). He had no recurrence with steroid treatment over 3 years following withdrawal of fingolimod.
“There are lessons here for both neurologists and MS’ers. (1) It is important to make the correct diagnosis of MS before starting treatment. (2) Fingolimod is unlikely to be effective in NMO. (3) NMO is a separate disease entity; it is not related to MS.”
Is the guy okay? Did he recover?This is scary. I mean, let's say I have been diagnosed with PPMS, bur my diagnosis is kind of based on what I've told my neurologist.What if my PPMS is something else because there is no specific way to tell if someone has that form of MS.I do worry that if Fingolimod gets to the market for PPMS'ers, there will be more stories like this. Then agan, let's say Fingolimod actually improves PPMS symptoms, how will you know who to give it to?
Don't worry but the time it comes on the market for ppms this safety aspect would have been long since tested. This is why we do trials to show drugs work but that they are safe. Fingolimod is in trials with ppms so an adverse effect such as reported here would be picked up. That is why we are thankful for msers who volunteer to do trials. It is also the reason that drug companies monitor any adverse effect after drugs are marketed. This called phase iv. This also why any adverse effect is reported in case a pattern emerges. On one of prof g trial someone died by drowning. Was this related to drug. ….highly unlikely.
P.S. The person show recovery and had no recurrence 3 years after stopping treatment.Also to put it in context Beta interferon is not good for NM0 either so it is not anything