Originally Posted by Natalie8

I saw my neuro today to talk about Gilenya. He has been following the data of the 300 or so people who have been on the drug for 6 years and the couple of thousand who have been on it for 3 years. He said it doesn't look like UTI's are a big problem. But people get lots of respiratory infections. Also herpes infections are a problem but he is not worried because as he said "we have treatments for that but not for PML which you get on Tysabri". He said more people seem to be getting viral infections rather than bacterial infections. It has a different mechanism of immunosuppression than Tysabri.

He said only people with asthma or other chronic respiratory issues should avoid the drug. For those with healthy lungs he saw no evidence of damaging pulmonary effect during or after going off the drug. He also told me the data did NOT show any cardiotoxicity (that's different than the initial slowed heartrate). That doesn't mean it can't happen 10 years out...but we at least have some people 6 years out.
There were 6 cases of macular edema. In 5 it went away after the drug was stopped. One person was left with vision problems afterward but that patient was on the higher dose that is not being prescribed anymore. He said that most eye problems developed in the first 4 months.
He recommended dermatology checks regularly.
He likes what he has seen so far. Apparently my clinic is setting up 5-6 people to wait out the 6 hour first dose together--I guess it's similar to the infusion clinic when you get Tysabri. So you better hope you like the people you are stuck with for 6 hours!!! The funny thing is he is really a Tysabri and Avonex guy--not a shill for Novartis at all. He left it up to me to decide.
If I remember anything else he said I will let you know.
By the way he does not like cladribine because of high cancer risks and everyone in the clinic has a pool going about whether the FDA will ultimately reject it. Everyone says yes.