gilenya for ms
Stacey

West Columbia, SC

#22 Oct 19, 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
How can I get more information? I would like to talk to you. I agree with the foreign crap. Been MS drug free for two years do to side effects. Need something else. Went to Neuro yesterday. Pushing the pill on me. Don't know what to do. I know how the others feel, there are times when I can't walk but there has to be another way. I have to take one med, then another for the side effct,then another for that side effect and so on. It has to stop. I'm still taking meds. for the effects of interferons.
Stacy

Grand Prairie, TX

#23 Oct 20, 2011
Lucella wrote:
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.
I really hope you would consider Gilenya. I take 1 pill a day, and have had NO adverse side effects whatsoever! I've been on it since last Nov.- and haven't used my cane since Feb.! Please consider!
Stacy

Grand Prairie, TX

#24 Oct 20, 2011
Stacey wrote:
<quoted text>
How can I get more information? I would like to talk to you. I agree with the foreign crap. Been MS drug free for two years do to side effects. Need something else. Went to Neuro yesterday. Pushing the pill on me. Don't know what to do. I know how the others feel, there are times when I can't walk but there has to be another way. I have to take one med, then another for the side effct,then another for that side effect and so on. It has to stop. I'm still taking meds. for the effects of interferons.
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 ----
Sheri

Brandon, FL

#25 Oct 31, 2011
Terri wrote:
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?
My grandson is 28 and was diagnosed 2years ago. He started taking Gilenya in October right when it came out. Before, he tried all the meds mentioned above, which landed him in the hospital each time with severe flu symptoms. He was really bad. He didn't take Gilenya the way he should have at first, but in July he was faithful to take it every day. Much of his strength came back, no side effects, he even started doing pushups! He felt so much better. He simply doesn't feel sick any longer, except if he gets in the sun...he can't take that. I just hope we can find a way to still pay for it when his insurance runs out. He is allowing himself to hope again that he can have a life. Good luck to everyone who is considering it. The one thing is when taking it, you are more susceptible to catching other infectious diseases, and also, your doctor will probably take regular blood tests to make sure you liver is tolerating it. If not, they may just slow down the dosage until it gets back to the right numbers or they might also stop it. No problem so far though.
Sylvia

Mansfield, OH

#27 Nov 5, 2011
My daughter has been on Gilenya for about four months. It is the first MS drug that she has been able to tolerate. In the past month she has had increasing fatigue and in the past two weeks, seems to be having an MS exacerbation. She has a delema. Her lymphocyte count is very low and she needs to take IV solumedrol. Has anyone had this experience? She feels that she needs to stop taking the Gilenya to prepare for the IV solumedrol, which also will strongly depress the immune system. The Gilenya nurse was no help. My daughter's neurologist did not tell her to stop taking the Gilenya and ordered the IV solumedrol this coming Monday, Tues. and Wed.(starting two days from now). Do you have any information that would be helpful to my daughter. Thanks.
lilbit

Sea Isle City, NJ

#28 Dec 3, 2011
I don't know if it's the MS or the drug that makes me this tired.
Liz

United States

#29 Dec 5, 2011
Thomas S wrote:
<quoted text>
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.
Thank you so much for your reply. I've been so afraid of starting gilenya. Stay well.
foxtrot

Phoenix, AZ

#31 Dec 15, 2011
Have been on copaxone for 2 years now. Dr. says I can't take it anymore because of ?atrophy. Doc wants to put me on Gilenya. Anyone out there that
is on gilenya and it works for them? Any side effects?
Future JD- Toledo Ohio

Columbus, OH

#32 Jan 18, 2012
foxtrot wrote:
Have been on copaxone for 2 years now. Dr. says I can't take it anymore because of ?atrophy. Doc wants to put me on Gilenya. Anyone out there that
is on gilenya and it works for them? Any side effects?
HEY!
I have been on gilenya since August 2011, and I really like it. I dont have to do shots (yay) and I was on avonex since I was diagnosed and it made me SOOOO sick! I wish you'd consider switching. I am now a first year law student in ohio, and I havent had my MS symptoms hold me back. I was diagnosed when I was 23 and hated the shots from day one! Hang in there, and I definetly say try it...you can switch to something else if you dont like it.
stacey

Lexington, SC

#33 Jan 18, 2012
J J T wrote:
<quoted text>
Homepathic "medicine" is quackery at it's best.
How do you know until you have tried it? Drugs are not the answer to everthing that goes wrong in your life. Drug companies just want to make a buck or two. No one know the long term side effects of this new wonder pill. I've been on every shot with promises that side effect will go away over time. Never did. Time will tell.
Julie B

United States

#34 Jan 19, 2012
stacey wrote:
<quoted text>
How do you know until you have tried it? Drugs are not the answer to everthing that goes wrong in your life. Drug companies just want to make a buck or two. No one know the long term side effects of this new wonder pill. I've been on every shot with promises that side effect will go away over time. Never did. Time will tell.
Stacey,

While it may not be the same thing that the original poster went through, do a google search for "Functional Medicine". A former classmate that was diagnosed in 2004, recommended it to me for my recent diagnosis. While I plan on starting on Gilenya as soon as I can, I will continue to pursue more info on Functional Medicine, as my friend has been med free for 2 1/2yrs. Biggest drawback I have seen so far, is that it typically is not covered by insurance even though it is actual MDs, etc., that are operating the clinics.

I also swear by acupuncture to help with paresthesia.
stacey

Lexington, SC

#35 Jan 20, 2012
Julie B wrote:
<quoted text>
Stacey,
While it may not be the same thing that the original poster went through, do a google search for "Functional Medicine". A former classmate that was diagnosed in 2004, recommended it to me for my recent diagnosis. While I plan on starting on Gilenya as soon as I can, I will continue to pursue more info on Functional Medicine, as my friend has been med free for 2 1/2yrs. Biggest drawback I have seen so far, is that it typically is not covered by insurance even though it is actual MDs, etc., that are operating the clinics.
I also swear by acupuncture to help with paresthesia.
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.
Julie B

United States

#36 Jan 20, 2012
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.
Stacey,

Here is something else you (or anyone else reading this) might be interested in reading:

http://www.healthy.net/Health/Article/Multipl...

Seven years ago, I believe I had my first (undiagnosed) MS attack. I went to an acupuncturist and over a couple of weeks, my symptoms (for the most part) disappeared.

I would prefer to NOT have to take medication, as I already take medication for my Hypothyroidism (Armour) and two meds for my Rheumatoid Arthritis (Methotrexate & Simponi). Since Simponi is a once-a-month injection, I decided I didn't want to deal with another.
B W Met

Mckinney, TX

#37 Jan 20, 2012
Started gilenya .05mg in Mar 2011. Last dose was pm Jan 5,2012.
During this time, I NEVER stopped the flu symptoms, lost weight, ached horribly, weakness & fatigue grew more & more. I had started being sensitive to touching my legs with my hands. Extreme cold. I was spending two- three times in bed for two three hrs. Each day. I have never done that before. Blur vision, dark urine,
Jan 5, started headache & besides one day, I have had a headache since. Ended up staying in hospital two times, BP up to 222/91. I had not even had any,ANY, kind, of headache since Feb. 2005! Vision blurry.....they did all kinds of tests, even spinal tap...my head hurt worse than the spinal tap.
2nd time went to hospital, left side of body had become numb.
My husband started checking on side effects for Gilenya.....Almost everyone of them
I had.
My Downward progression of side-effects with this medicine was so slight, I never knew what hit me til this headache.
Since being off the med, which I am going back to Copaxone, I improve every day,especially the fatigue.
I am not knocking this drug, I want people to know what the side effects are. Or at least what I have/am going through. Different drugs act differently in different people. By all means, I think this drug is great for the right people. Just not me.:-(.
If had a chance again for a oral medicine, think I might try it. Blessings to all.
Thomas S

Quincy, MA

#38 Jan 20, 2012
I have been on Gilenya for just about a year, and I am probably going to switch back to Tysabri as soon as possible. The drug has been working well (no new lesions), but I have basically been having mild flu-like symptoms for the past 7 months continuously. Other than that, no complaints I suppose (except my energy level has also been diminished since I began taking Gilenya.

I was taking Tysabri for over 3 years just prior to Gilenya - with no side effects and no new lesions. The bottom line is that Tysabri is the better drug (for me).
Barb

El Dorado, KS

#39 Jan 23, 2012
Terri wrote:
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?
No. Gilenya is totally different. I am 57, dxd with ms in 1998. I was on Avonex for 12 yrs. Always had the flu like side effects, fever,chills, fatigue & migranes. Copoxone did not work for me either. i was always sick.Have been on Gilenya for 5 mo. now. No side effects. The only thing is I expeience tiredness, but that is probably from the ms.
Sophie

Sydney, Australia

#40 Feb 14, 2012
Hi ,

I have been on Gilenya since May 2011 and have had 3 bouts of Shingles (which resulted in lengthy stays in hosp.). Apparently the Gilenya can bring this out if you have the Chicken Pox virus in your body. I have noticed improvements in my leg strength and walking abilities but still remain quite tired everyday. My thinking is also not always the best and in the last 3 weeks, I have had blurry vision which I'm about to have looked at this week. Some days my balance is terrible and I get pins and needles on my face and scalp and fingers in left and right hands. Does this equate to a relaspe?? Sometimes I feek like whilst I've had some improvements, I'm still in relapse mode.I was on Copaxone for 6 months prior to the Gilenya and I actually was developing new symptoms as the months passed by. It seems that some treatments work for some of us and other treaments don't. People (Laraine) should respect the fact that MS is different for everyone and we should never suggest things like "you need to get off teh drugs". I find these comments sometimes come from people who have never really suffered the terrilbly debilating symptoms of MS and think that those people should just eat sushi and they'd be fine. Well, I'm afraid it doesn't work like that - if only it did. All the best to everyone out there and hoping the treatment you find can go some ways to helping you feel better. At this point in our era, that's the best we can hope for!!
Stacy

Grand Prairie, TX

#41 Feb 15, 2012
Sylvia wrote:
My daughter has been on Gilenya for about four months. It is the first MS drug that she has been able to tolerate. In the past month she has had increasing fatigue and in the past two weeks, seems to be having an MS exacerbation. She has a delema. Her lymphocyte count is very low and she needs to take IV solumedrol. Has anyone had this experience? She feels that she needs to stop taking the Gilenya to prepare for the IV solumedrol, which also will strongly depress the immune system. The Gilenya nurse was no help. My daughter's neurologist did not tell her to stop taking the Gilenya and ordered the IV solumedrol this coming Monday, Tues. and Wed.(starting two days from now). Do you have any information that would be helpful to my daughter. Thanks.
In my case, BEFORE my neuro would start me on Gilenya - my MRI had to be free of any active inflammation. We did see, on the initial MRI - that there several lesions that were "on fire" , which concerned my neuro very much. She (my neuro) told me that the "house was on fire and the baby was screaming... And that we'd have to put out the fire, then address the screaming baby.". Clever analogy!

To put out the " house fire" -- it took: oral steroids, then IV steroids from a specialty pharm., and then FINALLY treatments of APHERESIS. Mission accomplished.

Only when my MRI came back "free" of active MS did my neuro start me on Gilenya. That was Nov. of ..2010, and I am ever so thankful. NOTE: Gilenya is the 1st drug I've taken for MS - which in my case is secondary-progressive MS.

I HOPE THIS HELPS. GET A 2nd opinion, do your research, ask questions!!!
aa4ms

Burlington, WA

#42 Mar 16, 2012
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

New York, NY

#43 Mar 27, 2012
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!

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