Starting Gilenya...any feedback?

[cuttersmom]

Well, we finally got insurance back when hubby got a new job..thank goodness. Got back into the neuro after not being there for a year. She is willing to start me on Gilenya, cause quite frankly, I am horrible with the Copaxone shots! I've done my blood tests, EKG and eye test, and all should be good, so hopefully I will start my observation dose next week.  Just looking for anyone's experience with it?  Even though I am dx as RRMS, I honestly believe that I am now either SPMS or was misdiagnosed and am PPMS, cause I really don't have relapses, just progression. Neuro says no one should be dx as anything other than RRMS, because you wouldn't be able to even attempt DMD's. Whatever..hopefully I'll see something with Gilenya!

On a side note..did another round of Acthar Gel..vial was $24.5K last year and is now $29.5K.  Yikes! Thank goodness for the $25 co-pay!

[Lulu54]

You have the neurostim for bladder control, right?  I understand from my urologist that those can be easily reset, so you might check with medtronic and get their information.  

  

[Lulu54]

That is horrible news about your wife.  She is so very young to have a stroke and I hope she gets excellent rehab and recovers most of what she might have lost.  I'm a heart attack patient myself and understand how frightening and unpredictable these events can be.

Give us an update sometime to let us know how she is doing, ok?

[cuttersmom]

I am so sorry to hear about your wife, and what you are all having to go through now, but thanks for sharing your story.  Unfortunately for me, I can't do MRI's as I have a neurostimulator implanted, although I am hoping to get that removed soon, so we can start following my progression (or decline :-).  

I'll keep you all in my thoughts and prayers.

Kristen

[RicricM]

Copaxone, methapredisone, solimederal, and gilenya.

[RicricM]

I would strongly recommend being closely monitored while on gilenya. My wife started taking it about two months ago, and yes there was some hair loss & itchy burning face but we thought it was working. Come to find out it made some lesions go down but allowed others to form, then last week she had a dissection of her colarted artery in her neck causing a massive stroke at age 29. All the doctors keep trying to tell me it wasn't the medicine but what the hell do they know(as y'all have probably figured out it is just a guessing game with MS). So please be careful taking this medication, and maybe have your doc do a MRI with contrast on your arteries before taking the gilenya and a month after so nobody ever has to go through what I'm going through right now. Thanks for reading my story an if anyone has any questions feel free to respond and I will do the best I can to awnser them, she ha taken all the ms medications in the last 9 years so I have had personal experience avanex, rebif

[Sarahsmom46]

I've been taking it for a year now too and other than some initial hair loss, nothing dramatic, it is working for me too. It sure beats the daily injections.  Like opie, I take it at night too.  You will sleep through the side effects if you even experience them.

There is a gilenya support group on facebook if you are into facebook.  The group was started by a patient and it is a pretty good source for learning from other patients, like this forum, and asking questions.  Just type gilenya support group into the search and it should come right up.  The group was a great deal of help for me when I first started the drug.  

Best of luck with your first dose experience.  Should be uneventful other than finding ways to keep yourself  occupied for the 6 hours.  

Julie

[opie74]

I started Gilenya over a year ago.  So far, it is working fairly well, as much as I can tell.  I take it at night....I think that I have less side effects that way.  Best wishes!  Ann

[Lulu54]

Wow - that is a bunch of news in your update.  The Gilenya sounds like a good choice - I've attended some talks on it and am impressed with their results.  If your doctor is willing to give it a try, I say go with it!  Although I have no personal experience.

Getting your insurance back is beyond wonderful - I am so glad that is not an issue for you.  It must be a great relief to both you and your husband.  Jobs and benefits are great.

Acthar's price is really crazy - it might go down some if more neuros use it for episodes, but I don't see tht happening any time soon.All the increases in drug prices are unexplainable to me - what the heck are they doing to pad their profits at the expense of people needing these drugs.

I agree with your neuro labeling everyone as RRMS, at least to start with.,  It should take a good year or so before that tag is changed - the doctors need to do a lot of observation and experiemnting with treatments.

be well, Lulu