The PROS and CONS of GILENYA

[Becca-_Sue]

Gilenya

I was on Gilenya for a week and Dr. took me off because my white cell count was way down. She said that was not a side effect of Gileya,so she's refered me to a hemotologist. Geez!!One Dr. after another.

[dm123]

Unfortunately no one can tell you that besides your insurance company. I've got Anthem BCBS Blue Access PPO and was told that Gilenya is a tier 4 drug, same as copaxone or avonex (those were the others I was checking). Regardless of which drug I choose my co-pay was going to be 25% with a cap at $2,500 / year. So my initial thought is that your co-pay percentage, etc. should probably be the same, however I'd take the time to call your insurance company and check.

If you do decide to go with Gilenya, Novartis is paying up to $800 of your co-pay through December 2011. This means that if your co-pay is $1,000, you'll only pay $200. They set it up as an automatic payment to the specialty pharmacy you use. The only way you don't get the full $800 is if your co-pay is less than $800.

Hope this helps.

Thanks for the info. We were switched to BCBS this month. I'm yet to find out what kind of coverage we have. We also live in a different state. You post does give good comparative data when the time comes.

[Just a small town girl]

I was on Gilenya for a week and Dr. took me off because my white cell count was way down. She said that was not a side effect of Gileya,so she's refered me to a hemotologist. Geez!!One Dr. after another.

Becca Sue - That's interesting. Gilenya actually works by lowering the amount of white blood cells in your blood stream (by keeping lymphocytes in the lymph nodes). It's actually entirely intended that you're going to have a very low white blood cell count. Your white blood cell count will go back to normal about 2 months after stopping the medication.

Here are some links discussing this:

http://www.novartis.com/newsroom/med.../1445917.shtml

"Gilenya ... is thought to work by reducing the immune system's attack on the CNS by retaining certain white blood cells (lymphocytes) in the lymph nodes. ... The white blood cell retention is reversible if Gilenya treatment is stopped."

http://www.nationalmssociety.org/abo...mod/index.aspx

"Gilenya™ ... is thought to act by retaining certain white blood cells (lymphocytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS)."

"Because Gilenya lowers the number of lymphocytes in the blood, you may be at greater risk of infection. ... White blood cell counts generally return to normal approximately two months after stopping this medication."

http://www.fda.gov/downloads/Drugs/D.../UCM227569.pdf

"GILENYA lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 2 months of stopping treatment. Your doctor may do a blood test before you start taking GILENYA."


Before you go off and pay to see a hemotologist, you may want to consider re-calling your neurologist in light of the fact that a lowered white blood cell count is in fact the intended purpose of Gilenya.

Of course something else might be going on with you, but the fact that you were taking a drug that's intended to tank your white cell count is probably something that should be considered. I'm surprised that your neurologist didn't know this. Hope this helps in any way.

Keep us posted on how things go.

[CrazyCatLady]

Of course something else might be going on with you, but the fact that you were taking a drug that's intended to tank your white cell count is probably something that should be considered. I'm surprised that your neurologist didn't know this. Hope this helps in any way.

Keep us posted on how things go.

Yeah I thought the same thing. My neuro is actually doing my labs at 8 weeks of being on the med instead of sooner. He showed me right in the docs Gilenya paperwork where it says 2 months to do labs. He said to expect that right now they will be off and as long as I feel OK and everything seems fine we should wait for the 8 weeks.
I just really like this med I hope that all neuros are up to date on how to use it. I think and hope it could help a lot of people.

I just want a cure already and I am hoping this med is the start of it!!

[Cindarelly]

Yes Becca I would get a copy of my lab work. I hate to quote it. But I think the white count can go as low as 3000 and as long as it holds there its ok. You can go back and read the info on it.. They have not even pulled a lab on me yet. I have been on since Jan5th.
I think most have lab work by now. I assume I will survive..
But the point is it does lower the white count. ( I would be really p ee od if I was you) If it was a normal drop.
Geeees.. I will only assume... as I shake my head this dr had to know what he/she was doing
Then again.. I know dr's
so probably not.. be your own advocate.. Good luck........I bet we find you back here with another doc

[dm123]

Yes Becca I would get a copy of my lab work. I hate to quote it. But I think the white count can go as low as 3000 and as long as it holds there its ok. You can go back and read the info on it.. They have not even pulled a lab on me yet. I have been on since Jan5th.
I think most have lab work by now. I assume I will survive..
But the point is it does lower the white count. ( I would be really p ee od if I was you) If it was a normal drop.
Geeees.. I will only assume... as I shake my head this dr had to know what he/she was doing
Then again.. I know dr's
so probably not.. be your own advocate.. Good luck........I bet we find you back here with another doc

Great advice. This is one reason I try to get copies of all my tests and MRIs.

Since this is a new drug, it would not be unusual for the prescriber to not know all the idiosyncrasies of a drug. Just look up Prednisone or any of the steroids at the list of side effects, and relative contraindications. There may also be a bit of CYA in the referral to a Hematologist as well. My neuro made a very special point in em-phasing that steroids can cause aseptic necrosis of the hips. I figure he must have gotten tagged by a law suit about this and makes sure he tells all his patients.

What I remember about WBCs is that there are 5 different types. Of most concern is an increase in the WBC count, and which of the 5 types is increased and is your body responding appropriately to an invader.

There can be other concerns that might need a referral but the most obvious is usually the cause.

[ms man]

Cindarelly, thank you so much for your kind words. Since my diagnoses the only thing that is effective is a 3 day solumedrol drip. The good news is (I guess), my legs are getting worse not better after stopping the G. This leads me to believe that maybe it was a coincidence.

I haven't tried any other medications since my diagnosis last year. I understand some people do some type of maintenance steroid, but my neuro does not like that plan for me since I'm only 24 and years of steroid use has some pretty bad side effects.
He is hinting towards cancer therapy. I have a 1 year old and a 2 year old. I will not be doing chemo. I am very interested in learning about other non-interferon approaches.

Have you tried Ampyra? I've been doing Ampyra, a twice a day pill, for the last 6 months and my legs are a bit stronger and I'm walking better.

[hodgeshs]

Have you tried Ampyra? I've been doing Ampyra, a twice a day pill, for the last 6 months and my legs are a bit stronger and I'm walking better.

No, I have never even heard of this medication. So far, MS has mostly affected my mobility. Anything that could help with my legs I will definitely look into and mention to my nuero. Thank you for the tip! I appreciate it greatly.

[ms man]

No, I have never even heard of this medication. So far, MS has mostly affected my mobility. Anything that could help with my legs I will definitely look into and mention to my nuero. Thank you for the tip! I appreciate it greatly.

Glad I could be of help.See what your Neuro says.

[Patti3250]

amprya

I too tried amprya and i did not notice any difference in my walk. I think that is becaus amprya was to speed up my walk (from what i understand) and my main issue is with foot drop on the left side. Another issue is a strange sensation in my feet that i have not been able to described accurately....almost like my feet are being pinched when they are not.......strange...anyways, the amprya was fine, just no improvement with my foot drop.

[JoeS]

confused

Hi, I know that this is not the point really, but I was under the impression that Ampyra is not a specific MS medication. Sure, it targets those with MS, but it helps with walking and stability, not the underlying causes of MS. It is because of this that Ampyra is allowed in conjunction with other MS medications... Or am I missing something?

[goldnurse1]

Gilenya 1st dose 2/17/10

I hope this works for us all.. I have had no luck with the crabs.. well I can't say that I did well with Beta for 6 yrs
did well with C and R for many yrs.

But I really need a good kick in the pants and I am hoping this is it..
I had a major flare that started in 07 while on REBIF at half dose.. ( had trouble tolerating inteferons). I really think this was in part stress related .. ( won't bore you all)
then I caught 3 major colds the next yr. One a chest cold. I seemed to just spiral down from there.
Was on copaxone at the time, I just went downhill and stayed there.
Neuro has had me off of C anticipating G since this summer.
I could have cried a river when my appt was cancelled. I kept telling myself " I am grown" I am grown" I am grown"
how silly.. I will be glad too when we have a few more to swap a story with on G. I will be more than glad to be there with you great folks.

This is my 1st post, any feedback about how you felt at the 6 hour point would be greatly appreciated. I am going into this with a nice fat WBC count of 9.3 (at least for today)

[SFPat]

This is my 1st post, any feedback about how you felt at the 6 hour point would be greatly appreciated. I am going into this with a nice fat WBC count of 9.3 (at least for today)

I just started Gilenya 3 days ago and had absolutely no change in the first few hours. My blood pressure readings stayed relatively close to each other throughout the day. My neurologist even let me go home after just 4 hours. So far so good.

[Cindarelly]

It was like water, no problem for me. I do suspect it has caused some increase in migraines and back pain.. but that seems to be improving.. I started it Jan 5..Good luck and welcome to the G club

[Kenmore]

To Gilenya from Avonex

Hi ms man:
If you want to know the cons of Gilenya, go to www.gilenya.com and read the Patient Medication Guide AND the Full Prescribing Information -- particularly the Warnings and Precautions section -- and the Safety Information Guide. The latter two can be found in the Healthcare Professionals section.

I was so excited when I heard about this. I haven't started medications yet. I will soon and have chosen Avonex. My doctor doesn't recommend using this as a first line treatment. She will if I really want to, but mentioned that I would need to have extensive tests done (i.e., opthomologist, ekg and several more).

Has anyone switched from Avonex to Gilenya? What is the difference in your opinion?

Thanks!