Is anyone else going to start taking the oral med GILENYA?

[Spuk]

Hi everyone, sorry I haven't been on lately-but...I'm back and pray yall are doing well. My Neuro has decided I am a good candidate for the newly approved oral medication Fingolimod (Gilenya) starting November. I have been away so if there is a thread out there on this please guide me there. I have read so much on this new prospective for relapsing MS that frankly scares the poop out of me....and since lesions are not reversable..if it doesn't work, well..I would be in much worse shape for saying yes to him.  Any advise out there? Thanks for helping me yall have been angels! God Bless!
Spuk

[Spuk]

Thanks for the positive words! Regarding the Rebif-etc...my neuro's advised me agressiveness in this state of the illness is a "necessity" with either Tysbara or the oral meds because the sick feeling reactions on avonex (at lower strength)-have had serious reactions. It makes since to me-but who knows...feel like a guinny (sp?) pig and not sure of anything at this point.

When I was dx, it was incredible to me....in brain lesions, o bands high and also in spinal cord. I didnt have an opportunity to get used to any of this-its been replapse and relapse and episode after...well u get it. I had always heard it was a slow progressive illness-thought-ok, maybe 10-20 years then I can begin to worry. Hit like a rock!

Have 2 lady friends within 1 mile radius dx over 10 yrs ago on rebif and Copaxene- I guess like ya said-I only have just begun to get upset about it. If ya read my latest journal-u can see why.  Thanks again for the engouraging words and kind advice.
I love this website and my many friends here helping me! Yall rock!

[sllowe]

Your absolutely entitled to be p' o'd about the whole scenario. Your inner strength will return to you, Spuk - it's in your character, I can tell w/what you say. Just have to get through your losses first and then it will be onward for you.  

Quick question for you, in the past 2 yrs has the doc mentioned putting you on Rebif or Betaseron. Though it's still an interferon like Avonex, it's dose is higher. Just thinking out loud here because if I were on the lower dose with increasing lesions my 1st step would be to try the higher.
ttys,
shell

[Spuk]

I was dx 08 with RRMS which is quickly changing after being actively on Avonex since dx. The problem is MRI's are changing -turning into what my neuro thinks is Progressive MS. He said the lesions although not growing, are actively increasing in number (from 6 to 8 in 11 months) also with my reflexes, memory,ability to walk etc, etc, has worsened 4 fold.
I also feel the new oral med is not an option for me after what I have learned here but the next step would be Tysbara (prob spelled wrong-bad day). Trying hard not to be negative but with the Avonex obviously failing in it's job the last 10 months-my hope was on the oral med as a possible miracle.
I have been in a serious sense of denial for since 09, and have just begun to open my eyes. Neuro said I prob had MS for over 10 yrs with the intense changes just recently rearing its ugly head. What was to be my wake up call-sent me in a free-fall.
I just hate being negative-it's not who I was all my life. I've always been the "strong" one in the whole family. It angers me to see that part of me leaving.
Thanks for the link my friends-guess its time I "suck it up and move on like a big girl".
Spuk

[sllowe]

  Hey there,
Haven't seen you in a bit! Nice to see you. I started a discussion on this wiggles mentions....I agree, it is scary, but check it out...

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

-shell

[wiggles94]

There was a thread on this recently - seems like most that are already on meds are staying with them if they are working.  Are you on any disease modifying meds at all right now?  I am dx CIS and am on REBIF. It's the thinking of my neuro's office that they want to wait on prescribing Gilenya until it's been around for a while and they see long term effects.

I wonder why your neuro thinks you are a good candidate for this new drug?

Good luck to you!