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?

Barb, I thought I read that the drug company that makes Gilenya was going to assist patients the way Amprya's maker did...
anyway, you need to go to an MS center and find a new specialist.
As If I'm telling you something you don't know...

Maybe I will be able to find a ms specialist if I move to Austin in 2012. At this point, I do not want to drive hours to go to the doctor. I assume that if they do have financial assistance, I would not be eligible or they would require a huge co pay. But I am not ready to try this one yet. I may be making a mistake, but I know how my body has reacted to all of these **** treatments.

Hi, I am new to this site and have only posted on the newbie thread. Still trying to figure out how to navigate!

I am going to go on the new drug Gilenya as soon as my neuro says it's ok. I have had the body scan, eye check, ekg, blood tests. Just waiting for the blood test results and instructions on what to do next.

Very nervous about the side effects. I rarely get sick (other than my MS) so I am not looking forward to the possibility of picking up every virus that comes along.

I will post back after I get started.

Lisa

Hi Lisa. Welcome home and much luck with your new Med. I hope it works for you with only good sides.

Started Gilenya 2 weeks ago. Sat in the dr's office for 6 hours to have my heart rate monitored. Apparently it dropped a few beats in the first hour. I honestly didn't even notice. Make sure to take something to do and some food!

I love taking the pill instead of the shots. The only problem is that I have been having problems walking for the past week!!! Makes me nervous. I'm so confused....is it my MS (from being off any meds for a month before starting G) or is it a side effect of the pill? I have an appt to see my neuro next week.

My co-pay is going to be the same as it was for Rebif. I was told that Novartis would be paying my co-pay for the first year I am on Gilenya. I have good insurance so this is good news for me.

I hope I don't have to go off of this because of my new symptoms. Time will tell

Lisa

Hi Barb,

Good luck making your decision about Gilenya. Here is some useful information about the drug and the assistance program. I'm like you--trying to decide if I should try it now or wait it out and see how people do with it.

http://mscare.org/cmsc/Informs-Novar...-Programs.html

The assistance program by Novartis is not based on income--mostly you just have to have commercial health insurance and not be on Medicaid/Medicare.

Here is what I picked out of the link above.

# The Gilenya Prescription Co-Pay Support Program, which will cover a significant portion of prescription out-of-pocket costs for eligible patients with commercial health insurance.*
# The Gilenya Medical Co-Pay Support Program, which will reduce the out-of pocket costs associated with Gilenya initiation for eligible patients who require certain tests before starting treatment.**

*Government program beneficiaries and residents of Massachusetts are excluded.
**Government program beneficiaries and residents of Massachusetts, Michigan, Rhode Island and Minnesota are excluded by law and are not eligible.

I just read on some blogs that Gilenya is paying everyones co-pays until 12/31/11. So that's a year+ of free meds.

If you move to Austin (Texas I assume?) I've heard this MS specialist is the guy to see. He is in a suburb of Austin.

http://austin.citysearch.com/profile...is_clinic.html

Thanks Natalie for the information. I am going to copy your post so I remember the name of the doctor. I still plan on waiting until June when I have my next MRI before I make a decision.