Fisheads Gilenya "TIME LINE"

[fishead]

After being off of Tysabri for 5 months (took MYSELF off of it, because I felt it was no longer helping me), my MRI HAS shown an enlargment of a lesion, therefore my Neuro recommended I go back on a DMD. We both agreed on Gilenya. Sooooo...

I am starting all my "pre-testing" for "G" next week. I am not afraid of shots or infusions (was on copax, rebif & Ty). My only worry is my RESTING HEART RATE that stays at 60 or below, because of my history of working out (hmmmmm some good that did, huh?). Guess we'll see what happens. I am not afraid of this tho, not really afraid of anything, to be honest.

I thought, perhaps, a "diary" of sorts might help others considering adding "G" to their arsenal.

Please feel free to ask me questions, and remember that this is only ONE persons "story" of Gilenya.

[fishead]

FIRST THINGS FIRST:

Got a call from my Novartis nurse, who will be following me, and calling me often. I explained my history to her, gave her my insurance info and she is now working to see how much of drug will be covered.

That is all for now, untill I get my EKG and blood work. Will update, once that is all complete.

I hope this may help anyone/everyone who is considering this.

Namaste,
LaTish

[Maj]

New to gilenya

I have been on copaxone for the past 9 years. I just switched to gilenya because my Nero thought it was a good idea and I had not been feeling so well on copaxone. Well..... I have been on gilenya for 3 days and I feel terrible. I am so tired all day and my back is killing me. I feel worse than I did before I started G. Has anyone experienced this? If so how long does this last? Does it ever get better? My heart rate is lower than in was for my 6 hour observation. I'm considering stopping it. Any suggestions?

[fishead]

wow Maj, sorry to hear of your yucky side effects.

I am still trying to get help covering the $1,300+ that I would owe as MY part of the CO-PAY.

am calling many resources.

MAJ, I am curious.... what sort of insurance do you have and what are THEY paying & what are YOU paying "out of pocket"?

[fishead]

Maj,
My suggestion would be to CALL YOUR NEURO and inform them of what is going on. They need to know....YOU need THEM to know.

[dmcmtk]

Co-Pay

Novartis has a very good co-payment assistance program, they will cover up to $800. My insurance has a $1200 deductable, so my first dose of G cost me $400 out of pocket and subsequent dosages $20. My insurance rolled over on July 1, so again in this calender year my first dose will again cost me $400.

Now a critical point, last July when I started G I was told to change my insuranct to unlimited perscription drug coverage, which increased my premium about $25 a month. So, you need to talk to both your Novartis contact and your insurance.

I hope this information is helpful. I have been on G since last July and have had no side effects except for being very tired the first four days, which than went away. Last mri's in May were unchanged. Now, is this all due to G? I have been taking regular supplements since Feb 2011, but that is a whole separate discussion. Keep us updated, good luck and Godspeed. Dave

** 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. **

[fishead]

[QUOTE=dmcmtk;1373816]Novartis has a very good co-payment assistance program......

Now a critical point, last July when I started G I was told to change my insuranct to unlimited perscription drug coverage, which increased my premium about $25 a month. So, you need to talk to both your Novartis contact and your insurance.

I hope this information is helpful. Keep us updated, good luck and Godspeed. Dave

QUOTE]

DAVE,
Thank you very much for this info, it is quite helpful for me, I really appreciate you giving this to me!

Today was my Opthomologist appointment, to get my base line observation of my retina, as Gilenya has RARE side effect of causing "macular edema" (macular 'SWELLING')

[kirbylynn]

I have been on Gilenya since November 2012.
I also get the co-pay assistance from Novartis and it makes all the difference in the world. Otherwise with our insurance I couldn't afford what it would cost.

I was dx'd in 2008 and Gilenya is the only MS medication that I've ever taken.

The 1st day I started Gilenya while I was at the cardioligists office for my 6 hours of them observing me I noticed in the mirror that my cheeks were very fushed. They stayed that way until after I returned home that afternoon.
For the 1st few months my cheeks would become flushed after taking my daily dose for at least a couple hours but that stopped over time. I started to drink 2 glasses of water soon after taking Gilenya everyday. I'm not sure if that's why my cheeks don't get flushed anymore or if my body just got used to the Gilenya. Either way it stopped happening.

I lost my ability to taste food sometime late last year before I started taking Gilenya and had an MRI done to see what was going on. The MRI showed that there was new activity so at that point I agreed to go on Gilenya. My Dr. didn't put me on any steroids because he said it was such a small amount of activity that it would be like killing a fly with a gun.

A couple months ago I had a couple new symptoms come up and my Dr. ordered another MRI that showed that small amount of activity was still there but that in another non active lesion had shown some repair. I don't know if the repair is because of the Gilenya or if it is just the normal repair that our brains do anyway.

I have an appointment comming up with another DR. an MS specialist to get a second opinion on wheather I should be getting a steroid treatent to stop the activity. I went to the hospital where I had my last 2 MRI's done and requested them on disc and was given them free of charge. I am going to take them with me to the MS. specialist and see what she thinks.

I get my bloodwork done every 6 months to check my liver and I now only have to go and get my eyes tested evry year.

Good luck! I hope it works as well for you as it has seemed to for me.

[fishead]

NOT GOING ON "G"

Due to inability to find financial assistance, after calling 10 assistance agencies AND finding out much more about the drug, I am NOT GOING ON GILENYA. The issue with the back pain really scared me, as I have a GREAT amount of that already, I do not wish to consider a treatment that can cause worsening of it.

THANK YOU TO EVERYONE, who responded to this thread. I wish ALL of you "Gilenya troopers" good luck and good treatment with it.

I will be trying out the BG12, when it is approved by the FDA which is scheduled in first quarter of 1013.