My neuro told me that PML never was 100% fatal, and that the probability of recovery is greater the earlier the condition is diagnosed.
ess
Having been on tysabri for a year and a half I have to have blood testing every three months.
The risk to me is minimal to how much the infusions have helped my life. I was having so many relapses in such a short time and my ms was extremely aggressive with many new lesions on my spine and brain.
I guess what I aam trying to say, even though these tragedies can happen, for me without my medication it would be way worse!
Have a great day
Barb
Thanks Corriel,
I agree could be better news, but as Kyle says at least with regular blood tests as is recommended they seem to have caught it prior to a fatal level. Not sure if that was due to it being found early? Article seems to say the person had low levels of lymphocytes for over 3 years.
For anyone wanting the info, basically article says:
It occurred in a patient with primary progressive MS who had prolonged severe lymphopenia, which is on the drug's label as a risk factor for PML, according to Biogen spokesperson Catherine Falcetti.
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"It's very similar to what we saw with the other case," Falcetti told MedPage Today. "It's within the risk profile, and the risk-benefit ratio remains favorable."
The other PML case with Tecfidera, reported in the New England Journal of Medicine earlier this year, occurred in a 54-year-old woman with MS, who had severe lymphopenia for 3.5 years.
Tecfidera has been available on the U.S. market as a treatment for MS since 2013. Falcetti said the company does not anticipate any changes to the drug's label at this time, and she urged physicians not to change their practice with the drug but to be vigilant about prolonged severe lymphopenia as the label indicates.
As someone starting on this in September, I'm still thinking the info I had before is still the same really. It has good potential results vs a pretty low risk of PML.
Those with PPMS have limited enough options don't they :-(
Nx
I read about this yesterday. While it is not godd to hear that PML is occurring with Tecfidera use, it is good to see that PML is no longer 100% fatal.
Kyle
Yes, thank you for the heads up. It's not the best news, but important to know...
Karen
Thank you for sharing this information as I just met someone who was discussing this. I'll pass the link along to them ......:)