Gilenya or Copaxone as 1st??

[twiztidchic]

I finally saw a neuro and he wants to start me on Gilenya but I have the option to start Copaxone. I've looked up everything from the cost on my insurance plan to the side effects of each. But I wanted to hear some experiences, both good & bad, of each. My insurance plan has Copaxone as preferred and Gilenya at non-preferred. And they are both about the same ridiculous price of about $4200 a month. So I know I'm going to get the assistance from either one I choose. So if you've had experiences with either assistance programs, let me know how it went on that as well. I've heard that Copaxone's is easier to deal with than Gilenya's. And from what I've seen on their websites, I see that's true! Any help is appreciated!

[Mable]

I wonder about that too, twiz. I chose Copaxone because I was scared of Gilenya side effects. But I'm not so sure those are as bad as I initially thought. Secondly, Gilenya seems to be more effective than Copax.

I've already invested 3 months on the Copaxone, so I'll wait to see if I'm a good responder. My main concern today is how to prevent disease progression in the long run. If a drug comes out that clearly has better impact on atrophy and axonal loss, I'll jump ship.

[cosake]

Hi - sorry you have a tough decision to make.

I used Copaxone for almost 6 months and my insurance covered it, so I don't have experience with their assistance plan. I've read that they will pay up to $ 500 or $ 600 of a co-payment and leave you with a $ 35 / month co-payment. I've heard that their program isn't as good, as far as $$ goes, compared to other programs.

I went through the Gilenya financial assistance route (because my insurance won't cover it at all), and although it took some paperwork and some time, I now pay $ 0 for my Gilenya. Be sure there are no errors in the paperwork - my Dr.'s office first filled out a form for assistance that was for research trials - which I was not in one. It was an accident, but still delayed the entire process.

I'm happy with my decision because I happened to be extremely sensitive to the Copaxone injections and had severe site reactions (but no other side effects). I'd also tried Betaseron with bad side effects.

That is just my personal experience.

Good luck with your decision. And realize that you can change your mind --- you aren't stuck if you pick one and decide it is not working for you.

[techie]

Copaxone

It's never killed anyone.
techie

[Redwings]

Hi twiztidchic:
I think poster techie nailed it: Copaxone has never killed anyone. Gilenya appears to be responsible for the deaths of several people. That comes with the trade-off of it working differently and being statistically more effective in controlling MS than Copaxone. That is, of course, for the people who haven't died from using it. It all comes down to benefit vs. risk, and only you know what the variables mean to you.

Hearing other people's experiences can be helpful, but no one else's individual experience can be used as a predictor of what might happen to you. So you have to ask yourself:
1) How active is my MS?
2) How much damage have I already incurred?
3) What do I want to get out of my drug treatment, and how much am I willing to risk to get it?

The medical decision should come first. Then comes the time to figure out how to pay for it.

[Redwings]

Mable brought up an important point that bears expansion.

I've already invested 3 months on the Copaxone, so I'll wait to see if I'm a good responder.

Compared to the other MS DMDs, Copaxone is a bit slow out of the starting gate. Whereas the other meds begin to show effectiveness vs. placebo within just a few weeks, Copaxone doesn't begin to show any difference from placebo until about the three-month mark. That performance has led to the general consensus that it takes Copaxone about six months to reach full effectiveness. In an active case of MS, six months might be optimally too long to wait to get the inflammation under control and start slowing the disease down. That has to be included in the process of deciding between Copaxone and Gilenya.

[twiztidchic]

Thanks for all the feedback! I have had 3 episodes in 6 years. They have progressively gotten worse. And this last one has added some problems that I've never had up to this point. My neuro & another Dr told me that I have several lesions on my brain and a few on my spine, a few of them are quite large. So now I have symptoms I've never had before & they're really causing problems with me. The side effects do scare me with G, but I'm also considering poking myself 365 times a year! I have about $3500 left on my deductible to pay, so Copaxone won't be in my reach if they only help with $500-$600. I guess I'll trust my neuro for now and try G. Hopefully I'll be one of the positive comments you see!

[Leeaura]

Leap of Faith w G

Twiz, My Neuro wanted me to start Gilenya because he said his patients were doing well on it. My first dose was mid April 2012.

I don't pay anything and didn't have to lift a finger. I think the Neuro's office did everything. A few days after my dx I got insurance approval letter (my copayment is $150). Next came call from Novartis assistance program saying they were covering cost thru 2012 and would review again for 2013. Then came call from specialty pharmacy saying they were ready to ship 90-day supply.

A little weird but very easy! Also, I haven't had any side effects and feel good so far. If u choose G, I hope everything goes as smoothly for you...

[twiztidchic]

Thanks Leeaura. It looks like I am going to go ahead with it. I did tell my Dr I would need help. My deductible is $5000 and I'm only up to $1600 so far. So there is no way I'd be able to pay the rest! Hopefully my Dr does the same. I'll probably give him a call and make sure they know they need to start the process on the help!

[BigA]

If you have financial issues, then Gilenia has a more generous financial program. I would speak with them directly. You may qualify for free medicine.

[twiztidchic]

If you have financial issues, then Gilenia has a more generous financial program. I would speak with them directly. You may qualify for free medicine.

Oh, I have financial issues! LOL, my deductible is way too high. And I work for a large insurance agency! I'm definitely going the G route. I decided that they will be the most helpful. I'm going to give them a call after I know that my Dr has sent in the prescription for it and my insurance approves it. Not sure how it works if my insurance doesn't accept it.