Gilenya???

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Gilenya???

Postby kitty1119 » Thu Jun 27, 2013 5:29 pm


Hi I am the mom of a recently diagnosed 29 year old son with MS remitting/relapsing.
His doctor suggested 2 treatment options.
1.tysabri which we eliminated before even finding out if he was JC virus positive.
2. Gilenya which he is opting for
My questions are for those taking this medications and I apologize as there may be several questions in the future:

1. have you had any side effects or any developement of any type of myeloma(sp?)
2. my son has blue cross/blue shield of Mass. any idea what his out of pocket cost will be?
3. Has your eye sight changed or your heart rate.

I am looking for any kind of feedback you can give me before we return to his doctor in Boston for the initial dose of medicine.
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Re: Gilenya???

Postby CaliReader » Thu Jun 27, 2013 9:17 pm

Hello,

I'm very sorry to hear about your son. Good luck to him with the Gilenya.

I had my heart rate drop during the first dose, but not enough to keep me overnight in the hospital. It came back up again.

My first dose observation, I sat in a comfortable chair about 10 feet from the nurses station. I was also about 3 feet from the 'crash cart' which has all the resuscitation equipment. I understood the risks, but I felt very safe. The nurses were clearly paying attention.

For me, this drug is easy to take. I don't like taking drugs, but since I've decided to take medicine, I like this one. I don't have side effects. I will have another eye exam in a month or so.

About price, I don't have blue cross/ blue shield, so don't know. I pay a small co-pay every month. This is not a cheap drug. If he has to pay a percentage of the price, it will be significant.
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Re: Gilenya???

Postby NHE » Thu Jun 27, 2013 10:49 pm

kitty1119 wrote:I am looking for any kind of feedback you can give me before we return to his doctor in Boston for the initial dose of medicine.


Welcome to ThisIsMS. I wish the best for your son. In addition to any replies you get on this thread, you may want to read through some of the discussion in the Gilenya forum in case you haven't already.

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Re: Gilenya???

Postby kitty1119 » Fri Jun 28, 2013 4:46 pm

thank you for the information and yes I have checked out the gilenya postings....
He has both is eye exam and ekg scheduled for this coming wednesday and then we will go from there.
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Re: Gilenya???

Postby aredmosquito » Fri Jun 28, 2013 7:45 pm

I do not take Gilenya, but after reading a section of the official website (http://www.gilenya.com/c/paying-for-gilenya), it seems they have a copay assistance program (as long as he does not receive federal or state medical insurance). They will pay up to $12K a year towards the copay.
Symptoms as far back as 2007
Diagnosed with RRMS March 2013
Started Rebif May 2013
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