I find the results of this survey a little difficult to believe (and if they are true, I would like to congratulate all readers of this blog for being ahead of neurologists in information on the oral therapies for multiple sclerosis).
A survey by Decision Resources finds that many more neurologists have even heard of Cladribine than have heard of FTY720, aka Gilenia or fingolimod. While three-quarters of docs surveyed were aware of Serono's Cladribine, only a third have heard of FTY720.
I have to wonder if this is a weird "artifact" caused by name confusion. I have followed the progress of FTY720 under the name fingolimod for a couple of years. In fact, I was pretty confused when it began to be referred to as "Gilenia" (see my blog Gilenia = Fingolimod). It has been reported that the name "Gilenia" was rejected by the FDA and the drug has no brand name at this time, but I still see it referred to as Gilenia. Anyway, maybe the survey did not contain the name "fingolimod" that many docs were used to - just a theory of mine. I would love to tell you what the full report says, but it costs over $9000, so I thought I would just continue to ponder this point for free.
How can 2/3 of neuros not have heard about fingolimod? I mean, it’s not like there are a ton of MS meds (that they accept as valid) to keep up with. CRABs, Ampyra and Tsyabri. Maybe if we tried to create an acronym with the new meds so that they can remember them. Sadly, CF and FC don’t seem to roll off the tongue as well as CRABs.
Curious to know if the surveyed neurologist were General or MS Specializing? One would think that MS Neurologist would be aware, more cutting edge if you will, about new medications / names that are coming out of the pipeline.
I was in the FTY study but left 6 months early as my MS symptoms were worsening after 18 months off Rebif and in this double blind study. Basically, after the 1st dose, the docs and I surmised that I was probably on drug and not placebo (first dose is a doozy for the heart rate!) and I was carefully monitored thereafter. It was great to NOT take shots, but I just didn’t feel good and I hated the respiratory side effects. Eventually, that subsided, but the overall malaise never went away. I’ve since switched to Tysabri and am keeping my fingers crossed.
So, for a lesson learned, the oral meds are just another arrow in the quiver of MS remedies and will work (or not) based upon the individual…just like all the other meds.
I am very excited at the thought of doing away with those dam needles after 16 years. But everything I have read comments that the pill form is for Relapsing, Remitting forms of ms. How about it’s use for secondary progressive? Does anyone know if it has been approved for us.