any gilenya users
 

I am nervous about starting this drug because its so new.

I have been trying to read peoples experiences but have not found much. Can anyone here share their experiences. The proccess of starting and any side effects if any you mighy have experienced. The Gilenya nurses wont talk to you until u r enrolled and i cant do that till may. I have to b off the tysabri for 3 months. I guess its to soon to know if you all feel it is working for you. .

Thanks
laurie f

I am not on it but waiting for answers from those who are.

Good luck Laura..:hug::hug:

MS clinic
 

When I went to my neuro last month and we talked about it, he said that he would have to refer me the ms clinic at northwestern if I was interested in it. The first pill has to be administered under a DR.'s supervision. That scares the daylights out of me. I am taking the wait and see approach. I am curious about other people's experience with it.

I am curious too. My neuro told me when i had an appointment in November that he wanted me to consider it. I see him again in June. I am hesitant to try it at this point since I have experienced so many problems with meds and treatments.

I am hoping the process is quick. I got my eys checed and am getting the EKG Thurs then will get blood end of April and hopefully start the end of May.

I heard in just 5 short months over 10,000 people are on this drug and i can't get people to share their experiences and Gillenya support wont talk to you until you are enrolled but since i was on Ty i cant go straight on Gilenya.

Sorry but i am frustrated becuse i have questions i wanted answered before i started the drug and cant get answered or people to share their experiences.

laurie f

Laurie, just tell them you refuse to start until you get answers. It's your body and you are not their ginea pig.:mad:

Actually after reading up on it, I wouldn't touch it with a 10 ft pole, due to adverse side effects.:eek: But, I wouldn't do TYsabri past 2 yrs either, because of the dangers of PML.:eek:

There is a facebook forum for people on Gilenya or those considering it. It's open to the public. Just type in "gilenya support group" on facebook. There are lots of people talking about side effects.

Oh wait, I suppose I can just paste it for you! :D

http://www.facebook.com/group.php?gi...6888138&v=wall

Read comments on this wall and also make sure you click on the "discussions" tab at the top.

Anyhow, I found it very informative.

Laurie, Nat's link is great...it should answer many of your questions. There's even a discussion of those leaving Tysabri and starting Gilenya.:hug:

Just wanted to say thanks i have been reading on the facebook site. Sally i told Gilenya support i wanted answers to some things before i started they told me talk to my Dr. Tryed his nurse says i am his first patient but she will try to get answers fro the drug rep. Lets see when i hear back.

Thanks
laurie f

Hi! I saw your post and thought I should give you some information.

My appt. with my neuro was Nov. 3rd, 2010, and that's when I made the decision to stop Copaxone and switch to Gilenya. I had 4 relapses last year that were treated with steroids each time, so I figured it was time to change DMD's.

I actually started Gilenya on January 6th. That's how long it took to get all the testing completed, the starter pack of meds shipped to my neuro, and get the 6 hour appt.

My neuro monitored my blood pressure and heart rate himself during the six hour trial period. Everything went just fine.

I have had problems with copay assistance and my insurance, though. I've had to make many calls to get them to clear my balance. I was getting pretty frustrated because it was affecting my ability to order other medications. This week, it was finally taken care of.

Having patience with Gilenya support is important. Sometimes the nurse navigators do not return phone messages, so you have to be persistant. Once they assign you to one, if they don't help, ask for someone else to assist you.

I've had few side effects since starting, but none too serious. The first couple of weeks I had a little dizziness, and I was extremely fatigued. I'm still getting over an upper respiratory infection, bronchitis and sinus infection which came out of nowhere.

My neuro said he believes it is from the Gilenya and is keeping a close eye on what is happening. After a few rounds of antibiotics and some other symptom meds, I am feeling much better.

My latest bloodwork showed extremely low lymphocyte counts. Gilenya is supposed to do this. My neuro was not concerned at the levels and I just received my second shipment.

I really hope things hold steady for awhile because I do not want to go back to doing the injections.

Is there anything specific you want to know?

Even though I haven't posted in awhile, I thought I would share my latest experience.

I have officially been off of Gilenya for two weeks. I have had non-stop 24 hour a day head pain since April 1st. 3 MRI's have shown extensive meningeal
enhancement. I've been in the hospital twice, and have had lots of tests including 2 lumbar punctures.

My neuro believes it is because of the Gilenya and is considered an adverse event which needed to be reported. I'm hoping the inflammation in the brain gets better instead of worse. The only treatment right now is pain meds until my low WBC count increases.

Sorry Gilenya doesn't seem to be working
 

Sorry Gilenya is not working to your advantage. I'm doing a study with Gilenya and I'll most likely not go back to the injections when the study is over providing my ins. covers it. I had headaches the first few days but other than that, nothing. I get bloodwork done on 7/11 and hopefully it will be fine. I've been on it for about 2 weeks, so we'll see.
I hope another oral comes on the market soon.

Awwwww, Jalee, I am so sorry for your pain. Looks like the big G was doing you more harm than good.

I'm glad you're off of it and I hope and pray you heal soon..:hug: When you're all better, try some LDN.:)

I was on Gilenya for 167 days. My MS was better, so I'm not happy that I've had this issue and had to stop.

Well, thats one G spot I wont be searching for. I have heard from several about massive headaches, and nausea on it.

Im sorry it didnt work for you. I had my fingers crossed and everything! :(

I just start gilenya on Tuesday this week, and after 3 doses, I was having burning eyes, hip/leg pain, nausea, and this horrible feeling of shaking/tremors, like I was on speed.

My neuro told me not to take it Friday or Saturday and restart it on Sunday.

Well, I felt better on Friday and Saturday, and just took my dose 2 hours ago, and I again am having the leg pain, burning eyes, and nausea.

I want to give this long enough to work, but at the same time, I don't want to continue if I am having an allergic reaction....oh how to know with such a new med!!

You have to ask yourself...is it worth it, whether it helps you a little or not??

I said no to Avonex, even though it seemed to be helping me, because of the side effects, because For me, the quality of life is the more important thing.

Love and good wishes...:hug:

I just heard from my Neuro, and they concluded that the chest tightness/squeezing/pounding feeling, red flushed face, burning eyes, dizziness and the feeling of shaking/tremors/apprehension is an allergic reaction to the Gilenya.
I was told to stop the Gilenya. I see my Neuro on thursday!

how scary! It would have been nice if they told you that before hand so that when it happened you could ID it, instead of being left in the wind to guess.

Im glad you will be feeling much better soon. :hug:

Out of curiosity, what kind of medical tests do you have to have before you start Gilenya, and what maintenance tests are done when you are on it - eg bloodwork and MRIs (and how often do you have them).

At this stage, from what I have been reading, even though I am coming up to three years on Ty, I don't think I like the sound of the side effect profile of the oral meds. With my timeframes, I am expecting my Neuro to suggest them to me.

Thanks for any info

Lyn

This thread just showed up in my daily google alert email for the topic of Gilenya and I just thought I would pop in to say that I have been on Gilenya since the TRANSFORMS trial. Saturday will be my 4th anniversary.

I can't tell you what tests are performed prior to getting on G now that it has been approved but during the trials we had yearly dermatology exams, eye exams every 3 or 6 months, blood work every 3 months, an annual MRI, and a pulmonary function test every 3 or 6 months. We also had an EKG and I think you will be tested for your antibodies to Chiken Pox.

The side effects I experienced were mild and disappeared after 5-6 months. They included:

1. Drop in heart rate of 14 bpm upon first dose which recovered after 6 hours.
2. Increase in upper respiratory infections (I was sick with a head cold at least 1ce a month for the first 6 months).
3. Increase in urinary tract infections (I had one of those just about every month the first 6 months as well.)
4. I had 1 blood test come back with elevated liver enzymes out of all 4 years worth of tests. It came on the heels of a weekend I spent helping a friend prepare Jello shooters for a party and I sampled a couple. I"m not normally a drinker. I didn't do it again and my blood work returned to normal.

As far as results, I have gone from walking with 2 canes at the start of the trial and relapsing every 3 months to no longer needing a cane, being able to run short distances, and I have not had a relapse since April '07.

It was the best decision I'd ever made for my own personal MS. Everyone's results may vary, and it may or may not work out for you, but I thought I would share my results.

I am a member of the Facebook Gilenya Support Group and try to participate on a daily basis. We encourage anyone interesting in taking it and those already on it to join us there.

For answers about side effects and risks vs benefits however, no internet forum or group will take the place of talking to your doctor or seeking answers directly from Novartis.

Hope that helps. :)

Same thing
 

Hi Laurie,
My name is Laura
and I', leaving in Italy I also have MS and I'm trying to fight tooo bad when you are 27!!!!
Anyways I'm in this forum cuz U really want to stay in tuch with rhe other side of the country also to have news on the new tratements.
I was under tysabri for about 2 years and a little more!
Now doctors found that I'm positive at JC virus so they want me to stop it and I feel sooooo bad inside because on one hand I gelt sssso goood with Tysabri but on wandsday i'LL HAVE mY LAST infusion and I really don't know what to do then.
Doctors say that it is my decision but the things are Continue with a PML risk, stop it and doing avonex even if I don't like it and I think it makes me feel wroste or try to start with the new Gilenya.
So is there anyone who allready started and who can give us information about it!?
Thanks a lot

Laura

I am test patient # 10 of FTY720
 

I've been on this medication for over 61/2 yrs. I have been on every dose study that Gilenya has done. When I was diagnosed in 2007, the whole left side of my body was paralyzed. In the course of 61/2 yrs, I have learned how to suppress this disease. I have chased it from the top of my spine to the tips of my toes.

I have learned what turns it on and how to turn off an attack in my body. Doctors cannot explain how I turn it off because they don't understand my findings. I cannot be a spokesperson for Gilenya because I discovered something the doctors cannot explain. I explain to the doctors that the attacks start in your mind and that it is caused by stress.

Suggestion: Document everything that happens to your body. Note what is going on in your mind prior to the onset of an attack. How much stress are you experiencing at the time of your MS attack. Note the tone of voice that people are using when speaking to you. Is it calm or harsh? Try to pinpoint the location of the where attack of numbness starts in the spine.

I would like to thank Novartis for allowing me to be a test patient. My goal is to be on this medication for the rest of my life, and share what I have learned with everyone. Please ask Novartis to allow me to share what I have learned about how to suppress the MS attacks with the world.
P.S. I won the battle against MS. :)

Starting Gilenya soon if my tests are ok. I have to have a test for macular edema first, then an EKG, as well as another EKG six hours after the first dose administered by a nurse in my home. Wish me luck! :)

My doctor suggested I switch to a stronger med since I'm having some progression on Copaxone now.

The best of luck & love to you Wiz..:hug:

Hi Wiz! :D

I answered you on the "other" board, too. But you probably didn't recognize my new user name, BoyzMom.

Anyway, I started Gilenya almost a year ago. I had been on Rebif, Tysabri (60+ infusions), Copaxone, IVIG.

I feel almost as well on Gilenya as I did on Tysabri, and that is saying a lot.

I had a few side effects to start - a slight nagging headache for a few weeks. And I was absolutely exhausted by 10 a.m. I switched to taking it in the evening, and now I don't fall asleep in my coffee!

Now, other than a great MRI in October, I have no side effects at all. Eyes are good. Liver function is good. Heart is good.

I'm jealous that you get to take your First Dose Observation at home! How did you manage that? I spent 6+ long and boring hours in a cardiologist's office!

Good luck to you!

That's good to hear Karen! :)

When I said I would try Gilenya, my neuro's nurse said the drug company would send an RN to my house to set me up. I'll need to vacuum up the cat hair beforehand I suppose. ;)

My symptoms are really getting worse so I hope it either stops them where they're at or makes me feel better. I feel like I'm 80 years old lately!

Thanks for sharing though, it gives me hope! :hug:

I'd urge you to join the FB group "Gilenya (Fingolimold) Users Support Group". It's closed so no one on your friends list can see what you post. I'm a member of that group, as well as one for Tysabri (which I take) and Lemtrada... seeing as I'm JCV+ I know I won't be on Ty for much longer than two years, I like to read about the other DMDs. Great support in those groups!

Thanks MS Belle,

I joined the group. I should be starting Gilenya in early March. I'm hoping it will keep me going. The new 40 mg Copaxone does not seem to be doing the job and the shots are getting old too.