The PROS and CONS of GILENYA

[Merridy]

Great news!

So glad to hear you are doing well? I' e been on Rebif for 9 years and am waiting to start Gilenya anytime. I did my bloodwork and ECG at the hosp last week. I hope to have similar positive results!

[ms man]

So glad to hear you are doing well? I' e been on Rebif for 9 years and am waiting to start Gilenya anytime. I did my bloodwork and ECG at the hosp last week. I hope to have similar positive results!

Good luck to you with Gilenya.

[KureMS]

On Medicare Too

Hi indwom - I'm on medicare too. I currently take copaxone/Lyrica and my doctor has put in a request for me to go on Gilenya. I heard the full cost of the med is around $4000. I will let you know if my ins approves and if I get it.

I have heard that the cost of Gilenya is prohibitive, even with financial assistance. Comments anyone/ I have private insurance and May 1st wMedicare (part A &B) will be my primary insurance with my private insurance secondary.
Right now, with financial assistance , I pay $10.00 per time for Tysabri plus a $25.00 office co pay, which is totally reasonable. But my JCvirus test is positive and I'm having to decide what to do. I might decide to stay on the Tysabri.
Comments appreciated!!!! Especially on cost.

[Cate Power]

So glad to hear your positive news

Your family must be thrilled.

I've had "the beast" for about 22 years (ON in 1989) but only officially since 10-31-1999 (when I awoke to a 1-sided face lift).

Although it's tough due to dual diagnoses of and Rx treatments for M.S. and Rheumatoid Arthritis, I am waiting to start Tysabri. I can totally relate to your moniker, "the steroid queen," as 5 or 10 mgs. each night are "the oil" that keep this "tin can" moving. Once, I tried a round of IV steroids for M.S., but the only result I had was the taste of rusty nail. Anyway, I've committed to dealing with the pain and stopping the steroids so I can take Tysabri, and "the white coats" have finally agreed to let me try it for 2 years.

I am still anxious to see how folks are doing on the other Rxs. SO glad to hear you've had dramatically positive effects.

Have you heard anything about not going from Gy to Ty, but okay to go from Ty to Gy? That's what neuro claims, but he's said other things I don't trust.

[ms man]

My neuro sent me to Dartmouth Hospital for a second opinion and the Neuro that I met there talked to me about Gilenya. He wanted me to understand that the pretests are necessary because there were 2 people that died during the trials. He basically scared the CRAP out of me. I don't think he was a big advocate for the med, he favored Tysabre over Gilenya. Not sure but he may have been involved with the trials. If something is working and it is only every other month, I might suggest to stay with it for a bit longer and let the Gilenya have a little more time in the field.

My Neuro told me that Gilenya is only about 60% as effevctive as Tysabri so I'm staying on Ty for now.Ty is working well for me so if it ain't broke I ain't fixing it.

[KureMS]

1st Rejection

Hi indworm, I told you I'd get back to you after filing to get Gilenya. Well I got my "1st rejection" letter today with my Medicare Advantage Plan (Humana) saying it wasn't on their formulary. However, I was also told that I could file an appeal requesting for a Formulary Exception, which is exactly what I intend to do. Wil let you know what happens.

I have heard that the cost of Gilenya is prohibitive, even with financial assistance. Comments anyone/ I have private insurance and May 1st wMedicare (part A &B) will be my primary insurance with my private insurance secondary.
Right now, with financial assistance , I pay $10.00 per time for Tysabri plus a $25.00 office co pay, which is totally reasonable. But my JCvirus test is positive and I'm having to decide what to do. I might decide to stay on the Tysabri.
Comments appreciated!!!! Especially on cost.

[ms man]

Hi indworm, I told you I'd get back to you after filing to get Gilenya. Well I got my "1st rejection" letter today with my Medicare Advantage Plan (Humana) saying it wasn't on their formulary. However, I was also told that I could file an appeal requesting for a Formulary Exception, which is exactly what I intend to do. Wil let you know what happens.

Shouldn't your healthcare be called 'inhumana'?

[archaeologygirl]

Gilenya working

My Neuro told me that Gilenya is only about 60% as effevctive as Tysabri so I'm staying on Ty for now.Ty is working well for me so if it ain't broke I ain't fixing it.

I too am worried Gilenya will not work as well as Tysabri! Did I read somewhere about a 6 month drug vacation? I thought 3 and Tysabri out of your system...

I might do every other month.

[KureMS]

Good One!!!

Shouldn't your healthcare be called 'inhumana'?

That's a good one!
Well right now my neuro appealed wanting a specific reason for rejection, "inhumana" told them that I had to try all the comparable generic drugs, so my neuro asked just what did they have in the same category as "G' and they finally said they had no other "oral " betaserons for me to try! But they still haven't approved yet. My neuro is on their case for me. Will keep you posted.

[usmc8286]

Hello, I'm new on here so this goes well. I took my 1st dose on 8/18/11. It went well and my bp only dropped by 10. The only side effects is the fatigued feeling. But I will deal with that over taken the injections. But anyone have any thoughts on anything to help with the fatigue? Any input will be helpful!

[CrazyCatLady]

But anyone have any thoughts on anything to help with the fatigue? Any input will be helpful!

For me the fatigue stopped after about a month or so but honestly for me it wasn't any worse then when I was on Betaseron.

I started Gilenya in Dec and am doing fine now.

[DianeD]

So happy

I have a thread called "Started my Glenya today." I started Dec 14th. So far no cons, I felt a little tired the first few days but that passed and I can't say for sure it was the Gilenya. As for pros, I love not injecting myself!!! The pill is easy to take, you don't have to worry about taking it with or without food just take it when it is good for you.

The only real con I guess it that they don't know how it will effect birth control pills which is a big deal for me but because your name is Ms Man I am assuming you don't take birth control pills. LOL! They do say for women to not get pregnant and use 2 forms of birh control if your first form is the pill. But really other then that I am happy so far. I hope this med works well for me!!!

you are doing well; that's good to here. I had to smile at the reference to BC pills; I'm old ( 66) and so happy to not have that in the mix!

In your case I'd be really 'careful' if you know what I mean; maybe the 2nd form of BC might be the rhythm method or abstinance! Guess you are the only one who can decide.

Best of Luck.

Diane

[ms man]

I too am worried Gilenya will not work as well as Tysabri! Did I read somewhere about a 6 month drug vacation? I thought 3 and Tysabri out of your system...

I might do every other month.

I think 3 months is enough to get Ty out of your system.

[ms man]

That's a good one!
Well right now my neuro appealed wanting a specific reason for rejection, "inhumana" told them that I had to try all the comparable generic drugs, so my neuro asked just what did they have in the same category as "G' and they finally said they had no other "oral " betaserons for me to try! But they still haven't approved yet. My neuro is on their case for me. Will keep you posted.

So "Inhumana" wants you to be a gunea pig with other drugs eventhough you've found something that works for you?Health care companies are the modern day legal mafia.Cosa Nostra is alive and well.

[Redwings]

I think 3 months is enough to get Ty out of your system.

What is that "I think" based on? The medical literature reports that the byproducts of Tysabri have been found in cerebrospinal fluid 6 months after the last infusion. msman, are you basing your 3-month opinion on some evidence that supersedes that knowledge of medical researchers and medical experts who, based on that evidence, find that a 6-month washout period is advisable?