Waiting to start

[pballer76]

My neuro finally got the results from all the testing.
They faxed the form in today. How long does it take to get the first dose appointment? Who called everybody, the hospital/clinic or gilenya?
My neuro said it would be one or the other.
I am still taking copaxone, is there any kind of washout before starting gilenya?

[Tracelyn]

If I recall correctly, once the forms were faxed I got a call within a week to schedule my first dose.

They will send a 2 week supply to the clinic where you will be observed. After the 1st week they will call to schedule a delivery for your regular 28 day supply.

I am not sure how your insurance handles co-pay's etc, but do not hesitate to ask for financial assistance from Biogen Idec.

I have been on it since October and the only problem I encountered was a week worth of headaches, but they responded to Aleve.

[tspaulding]

I would speak to your neuoro about copax and gilenya. S/he can tell you when to stop copax and start gilenya.

[pballer76]

Update

Neuro said I had to be off copaxone for one week. Still waiting on the GO program. My health insurance (humana) requires a prior authorization.
I have stopped copaxone and I am just waiting for this insurance mess to get straightened out.
I assume the next phone call I get from gilenya will be to schedule the first dose.

[Myoak]

Not posted to alarm anyone but to inform anyone who may be interested... A topic some women may want to discuss with their doctors was recently an article in a February issue of the New England Journal of Medicine titled: Women with MS Taking Fingolimod Should Be Counseled About Family Planning.
http://www.jwatch.org/na33552/2014/0...y=etoc_jwneuro

“Registry data suggest a potential increased risk for teratogenicity (causing fetal developmental malformations) with fingolimod treatment for multiple sclerosis.”

Sorry, but NEJM does charge a fee to access the article if you are not a subscriber. But I felt it important enough to mention the article to those concerned so they can follow up with their doctor, if need be.

[Pipes123]

Just my opinion, but I think a good neuro would absolutely warn about pregnancy issues without waiting to be asked. Mine did.

It has been proven that Gilenya does usually harm the fetus during pregnancy. If someone gets pregnant, they stop the drug and she gets asked to join a registry, so that they can follow how well or poorly the baby does.

[pballer76]

Finally scheduled!

My neuro spoke to me at the end of December. Finally 3/17 I am doing the first dose observation. I am excited to get on a medicine. I was on Tecfidera so I am excited that I won't have flushing or stomach issues.
I'm so thankful for the GO program, I had a $0 co-pay.
I just have to figure out what I am going to do for six hours.

[tspaulding]

I have a zero co pay also on Gilenya, for over 2 yrs now. This ends this summer, so I hope to continue.

I love Gilenya, only side effect I had was for first 2 wks, nothing since then.

I know we are all different, so I hope the best for you,

Good luck,

[pballer76]

Uneventful

Took the first dose and nothing happened. Slowest six hours of my life. Heart rate fell to 63 but was back up to 80 before I left. What is the best time of day to take gilenya?

[nursefairy]

I just started on Gilenya as well. I am in my second week. The first day my heart rate dropped into the 40's and we could not get it above 62. I talked them in to letting me leave as I was not symptomatic, am a nurse and live 5 minutes from the hospital.

I find the headache to be the most bothersome. It seems to be getting less each day though.

[Temagami]

I take it at night with the thought that if it is going to decrease my heart rate, I don´t want to be exerting myself. That is my personal theory, there was no recommendation from the neuro. I take it a few hours after dinner and right before going to sleep.