gilenya for ms

[aa4ms]

I was diagnosed in 2003. I took rebif for 5 years and it didn't stop my progression just slowed it down till I could barely even walk with a cane or control bowel movements. I have taken tysabri for almost 3 years and it has worked well enough for me that I have regained control of my body to the point that I don't loose control of my bowels and I can walk well enough without a can that you wouldn't know anything was wrong with me(control is not effortless). drugs are a treatment not a cure. drugs are meant to help give your body a leg up in fighting back. drugs, diet change and exercise seem to be a winning combinationfor me not just one magic bullet but a team effort to win this battle I am fighting every day.

[Suzanne]

I had been n Tysabri for over 2 years. I jumped at taking Gilena last December. I took it for 3 weeks before being hospitalized with Pneumonia. I went back to Tysabri after being tested for antibodies. I find Tysabri safer. Neither make me well. I'm still lookin for that!

[Letitia Forster]

JJT wrote:

<quoted text>
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.

Babs, I also have been on gilenya for 2 months now, I take two amphetamines a day 30 mg ea and still suffer a period between 5 -8 of extreme fatigue, I
cannot even focus my eyes to look at anything. I take both meds around the same time. My doc tells me that the amphetamine are not time released, I always get a second wind around 10 pm mand sometimes stay up until 4 am reguardless of what time I got up that morning

[Godspwr]

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

Thanks for the info, but u have a particular product name and a Dr or website, or book? Thank u

[Mckstacy]

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

No, there are no drugs that will "fix" or cure MS. However, Gilenya was designed to STOP THE PROGRESSION of this chronic disease

[Mckstacy]

lilbit wrote:

I don't know if it's the MS or the drug that makes me this tired.

Fatigue isn't a side effect. However, it seems to be the #1 side effect resulting from MS.

[Stacy]

stacey wrote:

<quoted text>
Thank you for you for your input. I have just not had very postive experiecne with my ms medications. I am lucky to not be have had any new relapses. I also to believe in acupuncture. I have found it to relieve a number of things. My insurance will not deal with that either. The things that seem to be the least expenive that work. The insurance will not accept. Why because they are in it for the money. I wish you well. I wish all of you well that are trying the gilenya. Wish I new the long term side effects.

Hopefully the long term side effects are prevention of further MS progression! Have you started taking Gilenya?

[Kristi]

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!!

I take my mine at night. I take most of my pills in the morning but I take santura for incontinence so taking it at night is not a problem.
The only difference I've noticed is muscle aches but that could be due to any number of things.
That's what frustrates me the most about this stinkin disease, not knowing what is normal wear and tear or caused by ms.
Good luck with your decision!

[Kristi]

Letitia Forster wrote:

<quoted text>
Babs, I also have been on gilenya for 2 months now, I take two amphetamines a day 30 mg ea and still suffer a period between 5 -8 of extreme fatigue, I
cannot even focus my eyes to look at anything. I take both meds around the same time. My doc tells me that the amphetamine are not time released, I always get a second wind around 10 pm mand sometimes stay up until 4 am reguardless of what time I got up that morning

Have u tried taking it at night?

[JodyJ80014]

Thank you for asking about Gilenya and being open to feedback. I was DX with MS in 2000. White Female was put on Copaxone in 2000. I continued having relapses and the tremors in my legs worsened to the point of using a walker and a cane to stay mobile. In 2009 I received (what I consider to be a medical miracle) the Baclofen pump. I now walk unassisted but continue to have relapses.

I was put on Gilenya when it was first FDA approved. I was very excited to have the opportunity to take the "first" oral medication for MS. All went well for 30 days, then I think we calculated within 45 days of taking the drug I got deathly ill. Vomiting, loose stools, fever are just a few of the symptoms the ER blamed on a viral bug.

My MS doctor took me off of Gilenya for two weeks for me to recover from the so-called viral infection. As soon as I began taking Gilenya again the symptoms began again. I was informed by a Gilenya nurse that having an adverse reaction to the drug after taking it more than 30 days was not uncommon. I since have been put back on Copaxone and struggle with relapses on a frequent basis. I am venturing to be involved in a study on Retuxin and Copaxone together. If the study is successful and the two drugs interact well together RRMS might be in remission for longer than a year...

We can only hope and pray that relief is in sight.

[Stacy]

Stacy wrote:

<quoted text>
I started Gilenya last Nov., and have exper'd NO adverse side effects whatsoever! Gilenya is most effective in RR MS - but I'm taking it and have SP MS. It works by STOPPING the progression of the disease! I haven't used my cane since last Feb. Still have weak R leg after walking awhile, cognitive problems when I'm super-stressed, etc... But if it has STOPPED THE PROGRESSION OF MY M.S.- I can live with these. Looking forward to next MRI in Nov. Being off any MS meds for 2 years is too long! Please consider Gilenya! It's side-effect free for me - and for the majority of others taking it. Take pro-active care of yourself! God bless ----

UPDATE: Latest MRI (May 2012) showed no new or active lesions!!! Still taking Gilenya with NO ADVERSE SIDE EFFECTS.:)

[Toby]

Stacy H wrote:

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!!

They want to help? I've had the opposite experience.. My daughter has MS.. She's been on Gilenya for 5 months or so.. When she turned 19, our insurance changed to 50% copay for name brand prescriptions.. We can't afford a $2000 per month copay.. We contacted Novartis and they said they can't help because we have WA state insurance.. We haven't found any options to keep her on treatment.. She ran out of Gilenya last week.. It seems to be working to keep her MS under control, and now I'm worried that she will go downhill with no treatment.. This just sucks!$4000 per month for 28 pills? I think they could wave our copay and still make boat loads of money, but they seem to be unaffected by the fact that my daughter will suffer without this treatment.. It's all about $$$$ with them, not helping people.. That my observation..

[staceym]

Has anyone heard of LDN (low dose Naltrexone)? It works great for autoimmune dieases. I went to DR. that would prescribe it. Most will not because Big pharmacutical copies will not back it beacause it is very inexpensive. They will not even back the testing behind it. It cost about $1.oo a day. Here is a link if you want to know m0re about it. The only side effect I had was having trouble sleeping on the 4.5mg. The dr. decreased my dose to 3.0. Had trouble the first week then got used to it. Been on it since April. No new side effects of MS. I have more engergy. There are more link to read but hear is one.
http://www.lowdosenaltrexone.org/

[staceym]

Sorry about all the errors in the post about LDN. Just read it. Guess I should of proofed it before I sent it.

[Brian]

Nicsta wrote:

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!

In the future if one of the meds is not giving you the satisfation you want, you may want to reconsider tysabri. My wife was on it for 2 years with absolutely zero side effects, no new symptoms, no exacerbations, and her walking and energy level increased greatly. She did have to eventually get off of it, due to the increasing likeliness of PLM. Otherwise she would still be on it.

[Brian]

In the future if one of the meds is not giving you the satisfation you want, you may want to reconsider tysabri. My wife was on it for 2 years with absolutely zero side effects, no new symptoms, no exacerbations, and her walking and energy level increased greatly. She did have to eventually get off of it, due to the increasing likeliness of PLM. Otherwise she would still be on it.

[Diane L - Goldcoast]

I was diagnosed in 2006, and was started on betaferon. I was on this until May 2011 but then started on Gilenya ( tagging on to the end of a trial)I had quite a few symptoms whilst on betaferon which were highlighted once Id come off it. The only symptom Ive had on Gilenya is weight gain and bruising easily. Does anyone else have these symptoms?? Loraine as I'm sure your aware deciding wether or not you take meds or not is a somewhat daunting time. I certainly gave a more nautral approach some concideration, but fear got the better of me....I saw the meds as my majic medicine and decided I'd work on keeping my body strong through natrapathic help and exercise....this worked for me. Everyone is different and we have to follow our gut feeling and remain positive where ever possible....

[AZSteve]

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?

I began gilenya back in February of 2012 after Copaxone seemed to be losing it's efficacy. I asked my neurologist if the new oral med was an opltion for me. He jumped on it. Well, long story short...or not... aside from getting the flu in May for a week or so resulting in mild vertigo which has mostly subsided I have neither improved or declined physically but my mental well being has improved. I feel good about this new drug and hope it holds off the disease so I might begin to rebuild

[Renee S]

I started taking Gilenya one week ago and have been extremely fatigued, dizzy and even a bit queasy. My GI system is not happy and I feel much more challenged in my mobility, it's quite scary. I am ready to go back to taking nothing which I did for 4 months before starting Gilenya.

For my history,. I started treatment w/Avonex in 2008 and have used Copaxone and Rebif. Copaxone was the best for me, minus the needles (hence the Gilenya). I think I will go homeopathic next or in combination with other therapies. Good luck everyone and never give up.

[Joanne]

I'm about to start Gilenya in 2 days time I've been in remission with my ms for 10 yrs this is the first time I have to take medication for my MS What should I expect