Gilenya

[kkeely]

I have been living with ms for 15 years.  Started out on Avonex for 12 of those years.  Had an attack a couple of years ago and my neurologist wanted me to start taking Betaseron.  Have had a decent run with Betaseron except for low white blood counts.  The last blood test they were so low that he pulled me off.  I am on nothing at the moment.  M\y doctor wanted to make sure the blood cell count came back up.  It did  come back up and he mentioned he wants to put me on copaxone.  I don't know if I can do an injection every day.  It was hard enough every other day.  I am meeting with him tomorrow.  I want to ask about gilenya.  I just don't want to start another injectable if there is a pill available.  At the same time, I also want to make sure that I get as much info as possible about both drugs and make an informed decision (as best as I can).  Anyone have advice?  I know from following the blog that there are a few of you on gileyna now.  Thanks!

[debgen]

Oops! I didn't realize this post was over a year old! I guess my response is no longer needed!

[debgen]

Hi kkeely!

I am in the very same situation as you and it is so hard to decide on a new DMD. I stopped using Copaxone a few months ago after suffering from 2 severe relapses in 8 months. I never had any real side effects from the Copaxone, but looking back on it , I never felt well the entire time I was on it. I also hated taking a daily injection.

My doctor has recommended that I start taking Gienya. Although there are risks, the rate of stopping relapses is reported to be 55% compared to 32% with the other CRAB drugs. I am also excited to switch from injections to a pill.

Ther is a lot of prep work needed to do before starting Gilenya. First you need a blood test to check your white blood counts. If that is good you will begin a series of immunizations because Gilenya compromises your immune system. I have already taken th ChickenPox and flu vaccines. Next week I will be taking a Shingles vaccine, which is optional. The last thing I need to do is ate an EKG. Whew!  I can finally begin Gilenya! I really am hoping for the best.

I did a lot of research before making this decision and recently attended a Gilenya conference. It is always a difficult and personal choice. I wish you the best!

Keep us posted,
Deb

[opie74]

No doubt, the pill is easier than the Betaseron.  However, one of the side effects is a low lymphosite count.  You definately need to talk to your doc about that.  I changed form Betaseron to Gilenya because I had 3 relapses in a year.  Let us know what you decide.

[Sparkysarah]

Hi and welcome to our MS forum - we always like seeing new faces and it can be so helpful for new members to have the experience of someone like yourself who has been living with the condition for some time.

It is very difficult for you to decide what treatment to change to and I think that you are sensible to try and find out as much as possible about the pros and cons of what is available to you. At the end of the day it very much a personal choice and as some others have indicated Gilenya is a new drug so the long term potential side effects are not yet known. However it would not have been licensed unless it has passed rigorous testing. I am currently on a drug trial in Uk for a similar oral drug to Gilenya and will be in a better position to comment after this week when I go into the extension trial (after 5 months on either placebo or drug) as I will know I am on the drug then. The testing I am going through is very comprehensive each month. However my gut feeling is that I am already on the drug and I feel very positive about it. Personally I hate the idea of injecting and find taking a tablet each day much easier to cope with.

Let us know hope you get on and what you decide and be sure to take along a good list of questions for your neuro.

Best wishes

Sarah

[sllowe]

Hi Kkely,

You in a tough spot. Meaning, knowing what you'll not likely commit too (every day injections) and a newer med. As a veteran MSer, I'm sure you'll played this all out in your head by now.

Here are a few of our discussions on Gilenya I hope are useful to you. We have a handful who have started and one who was on it in clinical trial. You mind me asking how your doing 15 years in? Also, how your lesion load is going (only if your comfortable to tell of course).

Thanks for joining us. Hope you'll stick around and share your experiences, knowledge and coping mechanisms.

-Shell


http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-fingolimod/show/1374357

http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-tidbits/show/1422642

http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412

[COBOB]

I do Copaxone every day without the autoinjector.  27ga  3/4" long needle.  Nothing to it.  Much easier than an intramuscular injection.  

I'm going to wait to see what the studies show in Gilenya.  There is almost 20 years of data on Copaxone.  I started on Copaxone because I didn't want to deal with the possibilities of flu like symptoms, liver enzyme issues, low WBCs, etc. with the interferons.    It is nice to know tha there are options.

Bob