It is being clinically tested on PPMSers at Johns Hopkins, my neuro is doing trial. I've always wanted to try it (maybe it's the old name - Fingolimod I like) My ex old neuro who moved away was in charge of trial until he moved and tried to get me in it. Now my new neuro is in charge but rejected me quickly (I am 6.5, you had to be 6.0. I really liked my ex-neuro, he was out of the box if you know what I mean. The new one is younger and a rule follower.

I'd love to try it at 1/4 dose on Ty. My white count is always 15 give or take. Could be caused by frequent urine infections so lowering my count might make things worse but i'd still love to try it a month or two. I'll ask my neuro next month. I know Ampyra at 1/2 dose has been doing good for me past few months so let's try this at a 1/4. Don't chemo drugs also lower white count? Novantrone?

Yep, that is what caused Jim to go into kidney failure. His immune system couldn't fight it after only one dose. That's why he wont be placed on any medication that would do the same.

Pricing just came out over the wire. $4,000.00 a month. That is $48,000.00 a year...for 30 pills. OUCH! :eek:

They said it was more than the injectables a month. You think?:rolleyes:

Better not drop one or more on the floor, or let kids and pets get to the bottle or blister pack. That stuff is lethal to some. I'm still shell shocked at the price.

Anyone here on/tried Gilenya yet? if not, next appt I'll be the 1st.

Good luck, keep us posted. My Neuro is a little skittish about me trying it. He says to wait until its been on the market for a while to see what the true side effects might be. Besides I doubt I will be able to afford.

Good luck, Eddie..:hug:

I saw my neuro this morning. We discussed Gilenya. He said of all his patients I was the one he thought of because I have not been able to tolerate the other treatments. I got the feeling that he would be willing to prescribe it if I want to try it. He also mentioned the $4000.00 monthly cost. I told him that I wanted to wait until more people are on it since I tend to have so many reactions to these meds. He agreed and then said he did not really want to prescribe it yet. But then he also cautioned me that I could have a major flare at any time and that I probably really should try something. "It is my job to give you information -- not advise you. But on the other hand, you do appear to be stable. Let's do another MRI in June and talk about it again." He also told me that I do have MS. I was shocked! For some reason, he tells me that during every appointment. Does he have patients that do not believe him??? I really think it is time for him to retire. He spends most of my appointments trying to figure out what my computer chart says and going over my meds.

I saw an announcement that the cost is going to be $48,000 a year. its MORE expensive than the biologic injections. They say its cost is based on its "research value" and not on its production costs. its just scary to think that ANY medicine can cost that much. Whether is chemo or an asprin...eeek!

Hey if Novantrone does the same thing, how much is Novantrone?