starting Gilenya 5 Dec

[bammaw]

Well, I finally have been approved for Gilenya after twice being denied. Took an adverse reaction to Copaxone and an appeal by my neuro but I'm good to go.

I have mixed feelings. Always a bit scary starting something new but I hope to tolerate the new drug and that it does it's job keeping me from progressing.

Will let you know how it goes.

Appreciate everyone on MS World forum. You are terrific!

[Goldfinch]

Good luck on it! I was advised to drop Tysabri by my neuro at my last infusion because I was hitting the #72 infusion mark and my risk for PML was 1:118. He recommended Gilenya, so I have had the blood tests, EKG and the vision test.

Neuro placed me on an IV steroid infusion once each month for the following two months as a preventative against a "rebound" effect from stopping Tysabri, then it's on to Gilenya on January 8th. I am very nervous about the potential for reduced lung capacity/dyspnea/increased incidence of upper respiratory and flu vulnerability because I am a vocalist.

I will give it a chance though, because I am more afraid of the relapses. My neuro's take on it is that "time equals brain" and he believes prevention of relapses is the best bet to keep the disease form ramping up and going progressive or incurring disability. His treatment philosophy is not a wait and see approach. I like that.

[bammaw]

Tarbaby

Thanks for your input. I don't think I picked up on the lung effect and will be cautious as I have asthma. Wishing you success with Gilenya as you start up in the new year. New year...new medication...hopefully a better "new" life for you.

[Kimba22]

I don't think I picked up on the lung effect and will be cautious as I have asthma.

bammaw,

I'm a bit surprised nothing was mentioned to you by your neuro about this, especially since you have asthma. Gilenya can cause reduced lung function in some people. My neuro required I take a lung function test before I started Gilenya, and I don't even have asthma.

Glad you are now aware of the possibility, though. Do call your dr. at the first sign of breathing problems.

Here's a link you can read about Gilenya: http://www.nationalmssociety.org/abo...mod/index.aspx

Hope Gilenya proves to be an effective therapy for both of you!

Best wishes ,

[bammaw]

Kimba

Thanks, will do. He's run me through the gammut of tests, eyes, heart, even gonna have a chemical cardiac stress test before starting. And lots blood work. Whew...so grateful for insurance.

[Tracelyn]

I have been on G since mid October and I have to say that I love it. Granted I do have a bit more frequent headaches, but nothing that is not manageable.

I much prefer the oral med to a shot any day.

The testing process for G is very in depth, and after going through all the testing, I was comfortable with taking it. My biggest fear is the lowered white cell count, but I will just make a point of avoiding sick people and see the doctor sooner rather than later if I am feeling poorly.

Good luck!

[Temagami]

Been on G for almost 1.5 years. I work with kids and am anal about washing my hands before eating. Have gotten sick once. No respiratory issues and fewer head aches than in the last few years. Am on a less frequent dose due to low WBC- but latest check shows lymphocyte count increasing- after two months on lowered dose.

Donīt know what itīs doing to the efficacy of the drug, but I donīt have any other options really and G has a good profile regarding side effects (assuming no cardio/ eye issues) and decreased brain atrophy. Do write the date of each pill on the packaging so you know if you took it or not and esp. if you have to take it on alternate days.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Goldfinch]

Been on G for almost 1.5 years. I work with kids and am anal about washing my hands before eating. Have gotten sick once. No respiratory issues and fewer head aches than in the last few years. Am on a less frequent dose due to low WBC- but latest check shows lymphocyte count increasing- after two months on lowered dose.

Donīt know what itīs doing to the efficacy of the drug, but I donīt have any other options really and G has a good profile regarding side effects (assuming no cardio/ eye issues) and decreased brain atrophy. Do write the date of each pill on the packaging so you know if you took it or not and esp. if you have to take it on alternate days.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Thanks for the suggestions Temagami. (Interested in knowing the background on your user name- what's it mean?)

I'm pretty forgetful sometimes so I will remember to write the date on my pills when I start. Very good advice. I had heard about the preventative effect on brain atrophy evidenced by Gilenya and am hopeful about that as I am a bear of very little brain at time. It was nice to have that reiterated as I am SO bummed about losing my Ty.

[bammaw]

So...the neuro didn't get my chemical stress test results prior to my 5 Dec scheduled appt to start Gilenya so they cancelled me.

Today they called and rescheduled me for day after tomorrow, Thursday 12 Dec. Looks like I'm finally getting started. Got lots of folks praying I will tolerate the new medication.