1st dose was this morning...

[heavymetalbuddha]

Hi everyone, brand new member, first time poster here. I took my first Gilenya dose at 8am this morning. I took a hard 4 hour nap as soon as a got home from that 6hour visit. I literally could not wait to get home and sleep. I felt fine otherwise, but the sleepiness was unbelievable. My question is, will this tiredness subside at all? I have to work, and it's not like they offer nap time at my job!

I've done the A-B-C injectables over the years (hated them all, especially Avonex), so I have high hopes for Gilenya.
My MS has robbed me of almost all my joys, so I am bitter, angry, resentful and pretty much depressed most of the time. I used to cross country run (as recently as 2009), effortlessly walk around for hours, and do amateur runway modeling at malls and minor local fashion events. Now I can't walk in heels, walk through the mall, and forget about running. No more mini-marathons for me
Last month I applied for a parking permit, and that sucks the most. I'm only 38 and it feels like the life I knew is over and now it's all downhill....soon to be downhill in a wheelchair? It's hard to stay positive when every other thought in my head is this effin disease and where it's taking me.
I know I'm not alone in my cynicism and jaded attitude. Don't worry, I'm not suicidal, just very pissed off at my fate. So, yeah, I've got high hopes riding on Gilenya. Thanks for reading my story! Peace and health to you all.

[Laughter28]

My husband is about to get his first dose this morning. Due to the recent deaths, he is required to spend two days as an inpatient in the hospital. He was on avonex for 12 years and then started having complications wtih it in 3Q2011. Next they tried Tysabri but his body rejected it (went into anaphalactic shock) on the second dose in December... so now onto Gilenya. I hope that his body accepts this okay... needless to say, life's been pretty stressful.

How are you feelign now?

[TLC_31]

Although it did not affect me as immediately, I also had incredible sleepiness. Maybe not the first night, but in succeeding nights I was wiped out by evening, and I wasn’t very productive during the day. In the evenings, I was told that “it looks like your soul has left your body.”

You say you used to be a cross country runner … I suspect that your pulse rate is low like mine. The Gilenya brought mine down even further, and it didn’t really rebound at all. That probably contributed to the fatigue. I disappointedly stopped Gilenya after 19 days (see my posts elsewhere here). I despise the needles, but Avonex seems to have otherwise served me well for almost eight years.

Please don’t “forget about running.” You may not run as fast or as far, but if you get out and keep moving the endorphins could likely mitigate the MS over time. And then eventually maybe you will run faster again! My fastest post-diagnosis 5K (still more than 5 minutes shy of my PR) was in October, and I will run my first half-marathon ever in April.

Ask questions anytime!

[Gorman]

first dose

[QUOTE=heavymetalbuddha;1340762]Hi everyone, brand new member, first time poster here. I took my first Gilenya dose at 8am this morning. I took a hard 4 hour nap as soon as a got home

Good Morning!
Thank you for posting your first dose after effects. When reading the board, I did notice that fatigue was or could be a side effect, not lasting forever though.

A friend of mine suffered from fatigued with MS while on ReBif. He was prescribed to take Ritalin and seems to work. Bad side is that he has to go every month to the Dr's office to pick up by hand the prescription to take to the pharmacy, which is a pain.

I wish you well....keep us posted.......I hope to be going down this route after a Dr's apt 2-21-12. Been waiting in the medical world since 9-18. First attack in 1999 and has been a ride of wonders ever since. I never know what body part will work when. All I know is if I allow myself to get upset or stressed, my leg goes immediately out. I'm trying to read more and put mind someplace else. I never sat down in my life, so every day is trying.

Feel my hug.

[heavymetalbuddha]

Laughter, TLC & Gorman

Thanks you guys, for all your wonderful responses and helpful words. You all have given me a bit of hope and an overall sense of "it'll be ok...I WILL BE OK.."

I guess I'll have to wait and see how Gilenya changes my life. Hopefully for the better. So now I'm on a combo Gilenya daily + Ampyra twice daily (which I LOVE, help improve my gait, big time) and if needed, Nuvigil to promote wakefulness. I only WISH my neuro would let me take Ritalin instead, because it's priced better and honestly, Nuvigil isn't very helpful. I still drink Red Bull on occasion...and yes, my heart rate and B/P are relatively low. Today was day 3 and surprisingly, I had a little TROUBLE sleeping and some G/I upset. I'm not giving up on this stuff!

As far as running, we shall see. I live near the beach and my greatest personal treat includes lacing up my running shoes, poppin in my earbuds and running up the causeway and back & forth on the sand...the heavier and louder the music, the faster I would run! Hence my screen name! Good times I tell ya! The Buddha part, well, I'm very much into Vinyasa Yoga and Buddhist ideologies... His teachings have steered my overall attitude into a positive light-filled place when MS starts to shroud me in darkness.

Furthermore, I had to give up going to concerts and day-long music festivals. I just don't have the endurance anymore. I've seen some of the greatest musical acts and
almost always, it was from a seat up front or from the pits up against the stage.

But instead of dwelling on the negative, let me thank you all again for showing me that I'm not alone in this. I've gotten into the bad habit of keeping this diagnosis all to myself. I mean, I have friends who have known me for YEARS and i treat my MS like a dirty little secret. They don't know because I hide it or lie about it. It has become a source of embarrassment for me because I can't keep up with my friends and I always have to say NO when they invite me to do things that I know I can't handle. I don't want to be a burden or a pain or "that weird lady who sometimes walks funny"...people at work have asked me if I'm ok....YES I'M OK, STOP STARING! ---Is what I would love to say to them!
That bad habit is something I know i need to work on. If I keep declining invitations, soon I might end up with no friends left. So, yeah, that's my mission---to be more open and honest with the people who care about me.

Again, I sincerely thank you all. Your responses mean a LOT to me. Maybe talking about it here will help to give me the courage to talk about it with my face-to-face friends. Feel good everybody, and peace to all

[atsmhn]

http://www.msworld.org/forum/member.php?u=73812

Hello,
I am looking to start on G soon, going through all the insurance hoops now. How are you now? I am so unsure but have really gone through all the options already, this seams to be my only logical next step. I hope you are doing well.

[mfog023]

I started in July and so far no major side effects. Sometimes a little insomnia even when I am so tired my eyes are watering. Overall, it was the best decision I ever made. There is a reduction of lesions and no new active ones. Much improved gait and balance. I can now raise my right leg and move the toes on both legs. There is also a reduction of tremors in my right hand. Physical therapy has been helping me to gain more mobility and balance.

[Elliejah]

Thanks you guys, for all your wonderful responses and helpful words. You all have given me a bit of hope and an overall sense of "it'll be ok...I WILL BE OK.."

I guess I'll have to wait and see how Gilenya changes my life. Hopefully for the better. So now I'm on a combo Gilenya daily + Ampyra twice daily (which I LOVE, help improve my gait, big time) and if needed, Nuvigil to promote wakefulness. I only WISH my neuro would let me take Ritalin instead, because it's priced better and honestly, Nuvigil isn't very helpful. I still drink Red Bull on occasion...and yes, my heart rate and B/P are relatively low. Today was day 3 and surprisingly, I had a little TROUBLE sleeping and some G/I upset. I'm not giving up on this stuff!

As far as running, we shall see. I live near the beach and my greatest personal treat includes lacing up my running shoes, poppin in my earbuds and running up the causeway and back & forth on the sand...the heavier and louder the music, the faster I would run! Hence my screen name! Good times I tell ya! The Buddha part, well, I'm very much into Vinyasa Yoga and Buddhist ideologies... His teachings have steered my overall attitude into a positive light-filled place when MS starts to shroud me in darkness.

Furthermore, I had to give up going to concerts and day-long music festivals. I just don't have the endurance anymore. I've seen some of the greatest musical acts and
almost always, it was from a seat up front or from the pits up against the stage.

But instead of dwelling on the negative, let me thank you all again for showing me that I'm not alone in this. I've gotten into the bad habit of keeping this diagnosis all to myself. I mean, I have friends who have known me for YEARS and i treat my MS like a dirty little secret. They don't know because I hide it or lie about it. It has become a source of embarrassment for me because I can't keep up with my friends and I always have to say NO when they invite me to do things that I know I can't handle. I don't want to be a burden or a pain or "that weird lady who sometimes walks funny"...people at work have asked me if I'm ok....YES I'M OK, STOP STARING! ---Is what I would love to say to them!
That bad habit is something I know i need to work on. If I keep declining invitations, soon I might end up with no friends left. So, yeah, that's my mission---to be more open and honest with the people who care about me.

Again, I sincerely thank you all. Your responses mean a LOT to me. Maybe talking about it here will help to give me the courage to talk about it with my face-to-face friends. Feel good everybody, and peace to all

So you're telling me Gilenya and Fampyra have given you the ability to run without dragging toes/tripping? I'm kind of in awe right now cause that's the combo I'm going to be taking... if I could even briskly jog on a beach I'd probably tear up from awesomeness.

Cheers

[heavymetalbuddha]

Hey Ellejah

So you're telling me Gilenya and Fampyra have given you the ability to run without dragging toes/tripping? I'm kind of in awe right now cause that's the combo I'm going to be taking... if I could even briskly jog on a beach I'd probably tear up from awesomeness.

Cheers

Hello Ellejah, allow me to clarify. I USED to run, I stayed very active in that lifestyle up until 2009. Then suddenly it seemed, fatigue and foot drag set in and took that away from me. Sadly, I have NOT been able to return to running since these symptoms appeared. The toes of my sneakers had gotten all scuffed and ruined, and as you describe, the dragging and the tripping made it unbearable. Like my feet were lead weights and my legs became like jelly. You know, THAT dreadful feeling.

Ampyra alone has strengthened my gait somehow, and if I miss it, I really notice a difference. I have now added the Gilenya, and today was day 8. I must say, i feel absolutely incredible. I shopped and walked around shops all day Sunday and then I came home and cleaned my house! I can't tell you the last time I was able to go all day like that.

I wish you the very best of luck with this combo therapy. I hope to hear good news from you. I really am amazed, the strength and energy i'm feeling. I'm thinking, I'll wait a couple weeks to see if i can handle running. I'm afraid of setting myself up for disappointment! But we'll see! For now, getting through a shopping spree without having to look for a bench is good enough for me.
Keep us posted, Ellejah!

[heavymetalbuddha]

Hello atsmhn

Hello,
I am looking to start on G soon, going through all the insurance hoops now. How are you now? I am so unsure but have really gone through all the options already, this seams to be my only logical next step. I hope you are doing well.

Hey there, thanks for posting. Actually, REALLY well. I'm very surprised, amazed, thankful, hopeful. It's only been 8 days, but every day I'm able to do more, last longer, walk stronger, etc.. The injections did nothing but pretty much make me sick and miserable, so really, this is a cakewalk. I understand your apprehensiveness about this. So was I...I must have read a thousand patient reviews and drug info listings and basically thought of it like you currently are: I've done it all, so this is the logical next step. As long as your eyes and B/P are ok, I say have faith and do what you must. I'm so glad I have. I really wish you the best, and please post an update on your status.

[heavymetalbuddha]

Hello mfog023

I started in July and so far no major side effects. Sometimes a little insomnia even when I am so tired my eyes are watering. Overall, it was the best decision I ever made.There is a reduction of lesions and no new active ones. Much improved gait and balance. I can now raise my right leg and move the toes on both legs. There is also a reduction of tremors in my right hand. Physical therapy has been helping me to gain more mobility and balance.

Wow, that is so great. So you're saying there was improvement seen on MRI? Absolutely amazing, so very happy for you.

I am starting to notice already, some HUGE changes. I cannot believe the improvement in balance, gait, strength. I totally agree with you when you say, it is the best decision I ever made.

[Music lover]

ah - insurance

Hello,
I am looking to start on G soon, going through all the insurance hoops now. How are you now? I am so unsure but have really gone through all the options already, this seams to be my only logical next step. I hope you are doing well.

I totally know the insurance frustration. We, Doctor and me, had to write letters to get approved - finally. I took my final shot of Rebif Sunday night. I start Gilenya approx. a month from now.