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James Scott MD

Orlando, FL

#1 Feb 3, 2011
I am interested in hearing feedback from people with MS who have started the new oral immunomodulator gilenya. Has the medicine shown a benefit in reducing relapses or in promoting improved neurologic function? Any side effects? What is your experience with this medication compared with others you have tried?
Stacy H

Mckinney, TX

#2 Mar 9, 2011
James Scott MD wrote:
I am interested in hearing feedback from people with MS who have started the new oral immunomodulator gilenya. Has the medicine shown a benefit in reducing relapses or in promoting improved neurologic function? Any side effects? What is your experience with this medication compared with others you have tried?
Hi - I started Gilenya.05mg Nov.19,2009. I'm a 50 y.o. white female, diagnosed w/MS 25 yrs ago. Basically ignored MS until summer 2010 - when MS slammed me into a brick wall! Being treated @ UTSouthwestern's MS Clinic with a rockstar neurologist - who diagnosed me w/2ndary Progressive MS. Gilenya is my 1st MS trmt.
So far - absolutely NO symptoms at all from the Gilenya!! Don't really think I've had any relapses - I'm just waiting to see if my walking/gait & cognitive problems will improve. I hope this helps
sue

Rye, NY

#3 Mar 23, 2011
I started taking Gilenya in December. I had no side effects and no benefits. On Dec 31st. I suddenly could not stand at all. I was taken to the hospital by ambulance with a temperature of 103. After 4 days I was diagnosed with pneumonia. Was the pneumonia related to the Gilenya? No one knows. I've never had pneumonia before and I had no symptoms other than a fever. I was never unable to walk before. I stopped the Gilenya immediately, took Tylenol and antibiotics and returned to "normal."
By the way, the Gilenya nurse was totally useless.
Sherry LV

Wooster, OH

#5 Mar 31, 2011
Thinking about starting Gilenya, but reluctant for two reasons. After being diagnosed with MS in 1994 started Beta Seron while on it had two of the worst exacerbations ever and after 18 mos. got hives all over my body. Neurologist told me to discontinue Beta Seron immediately. Now, 16yrs later and no medications I am still mobile but have trouble with severe numbness in both feet and balance. I am afraid Gilenya might trigger another exacerbation and also the cost is so expensive that my employer would probably find a way to get rid of me as my employer is self insured. I would appreciate any advice or has anyone else gone through the same?????
Stacy H

Mckinney, TX

#6 Apr 1, 2011
I just noticed that I made a BIG MISTAKE on my post dated March 9, 2011. I STARTED GILENA in Nov. of 2010 --- NOT in 2009!!!! SO SORRY FOR GIVING THE WRONG DATE!:)
Still no adverse symptoms w/the Gilenya. Yay! Still have diff. w/ walking (R leg weakness) & cognitive problems, i.e. short term memory & "processing" information when on overload! Thankfully, the brain retains all my "knowledge" - unlike Alzheimer's.
According to my neuro., unless needed - my next MRI will be 1 yr. after starting Gilenya. As I've learned - the med. has been highly effective in STOPPING the progression of MS. In the meantime, I need to work on what I can improve, i.e. physical strength, avoiding excessive heat, and not totally stressing out when a lot of life hits me at once! Overloads of stress=excaberations!
Working w/reps of Novartis has been awesome! They encouraged me to apply for financial help - and they kicked in a significant amount which my husband's salary & our health ins. did NOT preclude! They actually WANT to help out MS patients. Please consider starting Gilenya. TO SHERRY RE: the fear of another excacerbation: I had to WAIT to start the med until my MRI was clear of active inflammation. After 6 wks of intense steroids and blood/plasma exchange, my next MRI showed no signs of the active inflammation, and then I was able to begin the new med. Good luck & stay positive!!
Thomas S

Quincy, MA

#7 Apr 2, 2011
I started taking Gilenya on February 11th. I was taking Tysabri for over 3 years, and before that I had taken Copaxone and Rebif. I had no relapses and no new enhancing lesions for the entire time I was on Tysabri, but with the risk for PML it seemed wise to give the new oral medication a try.

Now, almost 4 months after my last Tysabri infusion, and about 7 weeks after starting Gilenya, it is probably a bit early to assess how it is working - other than to say I have no side effects and no new symptoms. I will have an MRI in just over 2 months, and then another one 6 months later. If there are any new lesions (or any other disease progression) then the plan would be to return to Tysabri.
Babs

Chester, PA

#8 Apr 14, 2011
Hello,
I have read all the posts and maybe someone can help me with this question.
I just started Gilenya 1 month ago.
I had been on Avonex for almost 8 years and the flu/side effects never went away...they increasingly became worse.
I take the capsule every day between 8:30-9:00 AM.
By 12 noon I am so tired...no amount of Nuvigil helps.
By 3PM I am extremely exhausted...and this is not doing anything physically exertive...unless doing dishes, walking from room to room and going to Dr. appts would qualify.
I have read all the literature and it says to take it the same time everyday.
I was going to talk to my Dr. to see if this is something I could take in the evening.
Is there anyone that has this extreme fatigue from the Gilenya or takes it in the evening?
Please let me know your thoughts on this.
Thanks!!
JJT

Pittsburgh, PA

#9 Apr 14, 2011
Babs wrote:
Hello,
I have read all the posts and maybe someone can help me with this question.
I just started Gilenya 1 month ago.
I had been on Avonex for almost 8 years and the flu/side effects never went away...they increasingly became worse.
I take the capsule every day between 8:30-9:00 AM.
By 12 noon I am so tired...no amount of Nuvigil helps.
By 3PM I am extremely exhausted...and this is not doing anything physically exertive...unless doing dishes, walking from room to room and going to Dr. appts would qualify.
I have read all the literature and it says to take it the same time everyday.
I was going to talk to my Dr. to see if this is something I could take in the evening.
Is there anyone that has this extreme fatigue from the Gilenya or takes it in the evening?
Please let me know your thoughts on this.
Thanks!!
Babs:

My wife took the same drug for a while with little success. Same with amantadine. Finally, her neuro switched her to adderal (amphetamine) which works wonders for the fatigue issue.

She takes 10mg in the morning and another 10mg early afternoon. But you need to be careful with amphetamine - it is psychologically highly addictive.
Terri

Inez, KY

#10 Jul 13, 2011
I am a 57 y.o. MS patient, diagnosed in 2004. I have previously taken Rebif, Copaxone, and am now on Avonex. I stopped Rebif and Copaxone because of the severe flu symptoms, and I am experiencing the same thing with Avonex. The day after my shot, I have high fever, muscle aches, fatigue, severe headaches, and I stay in bed all day. I am considering switching to Gilenya. Should I expect these flu symptoms with Gilenya?
grumpy40

Houston, TX

#11 Jul 14, 2011
Terri wrote:
I am considering switching to Gilenya. Should I expect these flu symptoms with Gilenya?
No. The only side effect I have seen is my avoidance of colds and flu. I avoid going around doctors office visits. I have been taking it for two years.
JJT

North Versailles, PA

#12 Jul 15, 2011
grumpy40 wrote:
<quoted text>
No. The only side effect I have seen is my avoidance of colds and flu. I avoid going around doctors office visits. I have been taking it for two years.
Were you part of the clinical trials? Gilenya was only FDA approved last October.
PICKLES

Clifton Park, NY

#13 Jul 16, 2011
CHRONIC SINUS INFECTIONS
vkk

Elizabethtown, NC

#14 Aug 18, 2011
I am on Gilenya already 3 months. It is the best MS drug I have used. Previously was on Rebif but it had apparent side effects: extreme tiredness which became tolerable after one year of use; GI problems. Yet I kept using it because it was working against my MS.
With Gilenya, I feel normal again. Zero GI problems. Not just improved, I feel normal. Things I never hoped to do with MS, I could do while using Glenya, like surfing and boogy boarding. With Gilenya I feel safe. With Gilenya,I am not alone.
Nicsta

Australia

#15 Aug 29, 2011
I have the difficult choice of changing my medication from Avonex as this has not worked for me over the past 18 months. I refuse to take Tysabri, too many side effects & difficult to manage in life. I am keen to try Gilenya now it has been approved on the PBS in Australia. I would love to know what assistance is available in your areas & what other natural therapies people use to manage their MS? My Neuro has advised me to continue with taking vitamin D as there seems to be some hype about the benefits. I need to make a decision in the next fortnight after my next MRI - fingers crossed there are no surprises this time!
Laraine

Mudgeeraba, Australia

#16 Aug 31, 2011
I have to comment here because I too was diagnosed with MS in 2003 but took the alternative road because I know MS is created in the body.
I had a hair analysis and was found to have many chemicals/pesticides and heavy metals which I detoxed with homeopathics and haven't looked back since.
I strongly suggest you drug users do the same.
The body is already struggling why add more foreign crap to it...
Drugs are never going to fix the problem.
Cheers
Laraine
kirsten

Bothell, WA

#17 Sep 23, 2011
vkk wrote:
I am on Gilenya already 3 months. It is the best MS drug I have used. Previously was on Rebif but it had apparent side effects: extreme tiredness which became tolerable after one year of use; GI problems. Yet I kept using it because it was working against my MS.
With Gilenya, I feel normal again. Zero GI problems. Not just improved, I feel normal. Things I never hoped to do with MS, I could do while using Glenya, like surfing and boogy boarding. With Gilenya I feel safe. With Gilenya,I am not alone.
vkk: you are the first person I've read who seems to have the same result as me. I feel 10 years younger. I used to have to spend half the weekend in bed (while on Avonex or Rebif). Now I feel normal. Just hiked to the top of a local mountain a couple weeks ago. Never would have tried that while on the interferons. I thought my tiredness was MS, but it turns out it was the drugs I was on!
Lucella

Sydney, Australia

#18 Oct 14, 2011
I have been using Avonex since January 2010 with no real improvement to date and am currently considering the options of Gilenya or Tysabri. Neither really appeal to me because of the risks.
Regarding Avonex and the flu like symptoms experienced by some of the posters; my MS nurse recommended I take two Panadol 'back and neck pain' tablets when I have my injection (at night). When I do this - no side effects. When I forget - BAD flu like symptoms and every bone in my body aches. I hope this helps.
Liz

Hollywood, FL

#19 Oct 14, 2011
Thomas S wrote:
I started taking Gilenya on February 11th. I was taking Tysabri for over 3 years, and before that I had taken Copaxone and Rebif. I had no relapses and no new enhancing lesions for the entire time I was on Tysabri, but with the risk for PML it seemed wise to give the new oral medication a try.
Now, almost 4 months after my last Tysabri infusion, and about 7 weeks after starting Gilenya, it is probably a bit early to assess how it is working - other than to say I have no side effects and no new symptoms. I will have an MRI in just over 2 months, and then another one 6 months later. If there are any new lesions (or any other disease progression) then the plan would be to return to Tysabri.
I am in the same situation. But I haven't started gilenya yet. I thought I couldn't go back to tysabri. Did your doc tell you it was possible?
Monique

Bentleigh East, Australia

#20 Oct 17, 2011
Laraine wrote:
I have to comment here because I too was diagnosed with MS in 2003 but took the alternative road because I know MS is created in the body.
I had a hair analysis and was found to have many chemicals/pesticides and heavy metals which I detoxed with homeopathics and haven't looked back since.
I strongly suggest you drug users do the same.
The body is already struggling why add more foreign crap to it...
Drugs are never going to fix the problem.
Cheers
Laraine
I was diagnosed in 1997 and commenced Avonex soon after, I swapped to Rebif once it came onto the market and has just started on Gilenya. For most these years i have been almost totally asymptomatic. Only suffered from heat related fatigue in last few years and some dcline in mobility over the past 12 months. I STRONGLY support the use of medication to help delay progression. Its worked for me !
Thomas S

Quincy, MA

#21 Oct 17, 2011
Liz wrote:
<quoted text>
I am in the same situation. But I haven't started gilenya yet. I thought I couldn't go back to tysabri. Did your doc tell you it was possible?
Actually you can go back to Tysabri - believe me, Biogen would be quite pleased to resume treatment! Furthermore, it is believed by many that if you stop Tysabri for a significant amount of time and then restart, that upon beginning again you have a fresh 3 years of being in the lower-risk category. This is one of the things that would appeal to me about having taken a long break.
So now I have been on Gilenya for over 8 months, and still no new lesions (and no side effects). My only complaint is that I have forgotten two dosages, but that is probably pretty minor. Yet with Tysabri forgetfulness is less of a possible factor, because of the monthly infusions.

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