is anyone else frustrated with Gilenya Support

[laurasari]

I have tried asking them questions as simple as, do i have to have the blood work done less than 30 days before aproval or 30 days before start date, how long does it take to be aproved and a few more all i get is ask your Dr. I called knowing they did not know and his nurse said i am his first patient but will see what she can find out from the rep.

My husband did not believe me so he tried all we got was we have to discuss it with Dr can't answer any questions till we are in the system. My questions need to be answered first because i came Tysabri and need to be off 3 months.

Thanks alot just very frustrated.
laurie f

[laurasari]

maybe i should have asked for others experiences with gilenya support whether good or bad cause i guess i am the only one that does not find them helpful at least not before you get into the system. Thats good please share experiences.
Thanks
laurie f

[Just a small town girl]

What I've noticed is that once you're signed up and have a nurse navigator things tend to go easier. I had an amazing nurse navigator named Darlene and she really took care of everything for me, got back to me right away, etc. But to be fair, I also wasn't asking these kinds of questions. My neuro runs a lot of clinical trials and has a very set protocol, so I got all of that from her office.

The only times that I've called the general helpline, they've been utterly unhelpful. But as sucky as the general support line is, I still love this medication enough that I consider it a minor inconvenience.

My only advice is that everything will get a lot better / easier, once you actually start and after you get set up to get your prescriptions through your specialty pharmacy.

Keep on keeping on and keep us posted.

[Camcojo]

You are definitely not the only one. It took months for them to get me in their "system" and there was little communication from them. They rarely return calls and have been of no assistance to me.

Once I got in their system the Patient Assistance Program seems to work a little better. I've dealt with them for a couple months now. They routinely call for refills and I haven't had a problem with them so far. However, they are different from the Gilenya Support Program.

I know that one or two have had success with their navigators, but most have struggled. My first navigator was either fired or quit and I haven't heard from them since, and that was back in December. I've tried to call them but never got a call back. Most of the information I get actually comes from reading the post of people currently taking the meds. The ones that were in the clinical trials are especially helpful since they have the most experience.

Dealing with Novartis has been quite a wake up call for me since I had such a good experience with MS Lifelines. But Rebif didn't work for me.

I do agree that the medicine (Gilenya) seems to be working so well for me that I'll deal with the incompetency of Novartis for now.

The one thing I learned while dealing with the support program was patience. It took two weeks for MS Lifelines to get me started with Rebif. It took TEN weeks get in the Novartis system.

Good luck and I hope it all works out for you. Hang in there!

[laurasari]

Thanks to those that responded. I will just hope that everything falls into place when the time comes. After Memorial Day weekend i am away for the summer and Dr wants to see me a couple weeks after starting. I can come back in June but not July and then again in Aug so my start date if not timely would be pushed to Aug this is my concern.

Thank you
laurei f

[jmm9503]

I too have had problems with the Novartis support program. I am on my 7th nurse navigator since December. I have recently left 3 messages for her with no response. Thankfully my MD is very knowledgable about the drug (she was a principal MD in the trial) and can answer my questions. I biggest issue has been on reimbursement. I just recently received my 2nd shipment from my mail order pharmacy and now have found out that I was charged for it, not Novartis as agreed upon. Please be alert for these charges-as now I have to dispute it with the credit card company and try to deal with Novartis. I guess "buyer beware" applies to drug reimbursement programs. I will continues with the issues as the drug seems to be working. To bad the Novartis system does not work as well as there drug!! Happy first day of SPRING to everyone!!!!

[Scooter24]

If the pharmacy charged you and wasn't supposed to talk to them, that is all the credit card co is going to do and not know the backround. they just need to issue a credit to your card, I had this problem all the time with Medco, I stopped allowing them to do auto charges to my credit card to stop it. Most of the time they just hadn't submitted the request to the drug co for it.

[jmm9503]

Thanks Scooter. I have already talked to my mail order pharmacy and they are going to resolve the issue. I think the problem stems from the fact that Novartis said that they would arrange for the mail order shipments and have not. I had only 3 pills left in my 28 day supply pack when I contacted my mail order pharmacy as Novartis had (and still has not) returned my calls, to process the order. I'm glad that I can go directly to my mail order pharmacy and not only through Novartis for refills, or I would be in danger of missing pills (which I don't want to do). Just those of us going to through the Novartis reimbursement program beware!!

[Bandito]

I am on my second nurse navigator and she doesn't like to return phone calls. I was really happy with the first one I had. Has anyone asked to switch nurse navigators? I'm thinking about asking to do so.

[CrazyCatLady]

I just want to say how sad all this is. Novartis has this great drug but no service for us. It just isn't right.

I feel for everyone dealing with them. I dont have a nurse navagitor I just have my neuro who sent the script to my mail order pharmacy and the meds came in the mail. I haven't had a reason to deal with Norvartis other then when I had questions about how the med is shipped and that was a small nightmare.

Here's to hoping Norvartis gets it together.