@gojira

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gojira

Gilenya

Hello all! Just wondering if anyone would like to share any experiences with Gilenya. I am starting a study pretty soon between Copaxone and Gilenya. I dont know for sure what im getting yet but they said that its a 20% chance of Copaxone and 80% Gilenya. Reading the booklet they gave me on Gilenya and its side effects looked pretty horrible. I know it will effect everyone differently but just wanted to hear a few personal experiences. Thanks :)

gojira

@gojira

Also just read that weakening the immune system could activate the JC virus??? That looks like crap. Is it even worth the risk adding another obstacle in my life? Opinions??

Stumbler

@Stumbler

@gojira , there are a few members on Gilenya, which is the more efficacious option. Hopefully, @janep or @norfolkgal , may come along and give their firsthand experiences for you

gojira

@gojira

Thanks! I did go back and search gilenya on this site and found a few helpful things. Just thought there might be new info out there.

cameron

@cameron

Gilenya - a non-event! The side effects are rare. The only negatives were the first dose, which has to be taken under hospital supervision and entails a day spent hooked up to monitors (take your book, prepare to be bored), plus the 'washout' period when your body has no more of the old drug inside but has not yet absorbed the new one ...... although it sounds as if you're not on anything so there'll be nothing in your system to 'wash out'.

norfolkgal

@norfolkgal

@Stumbler is right, I'm on Gilenya. I've been on it now for just over 2 years & had no relapses :) As @Cameron mentioned, it's a downside that you have to be in Hospital for the first tablet to be monitored as its known to lower the heart rate. After that it's so easy, just one tablet a day & all sorted, I take it in the morning when brushing my teeth as that's a habit I don't forget so I don't forget the tablet :) For side effects I've only had hair loss. I tried all sorts to try & stop it but it's now steadied & I'm not sure if what I'm doing helps or its just time. Other than that I've no problems so I love it. I did have the dreaded MS hug a couple of weeks ago but as it didn't last over 24hours I know it won't be called a relapse.

Sonia1984

@Sonia1984

Taking the pill the first day is very uneventful. One day for a total of six hours in clinic so you might pass out from boredom. I spoke to my neurologist about the PML and the risk is extremely low only 3 people on the drug have developed PML. I would assume the stronger DMT'S will carry this risk as it does lower your WBC. They do monitor you consistently so don't let side effects deter you. The only side effect I get now and that's occasionally is a headache. Good Luck!

gojira

@gojira

Thanks for all the responses. Im definitely glad to be starting it soon. I was in denial when they first offered copaxone so i turned it down as well as the steroids. Anyway, now im glad ive waited because everything in the study is paid for by the doctor and hes paying me for the visits!! Only thing im worried about is my heart rate because its already pretty low. Between 58 and 62 usually.

sebastianmortensenmarine

@sebastianmortensenmarine

Here's my two pennies: I started two months ago and after an uneventful first time under observation, I went back home with a smile on my face. However, I soon started getting nauseous and fatigued to a point of despair. Also, all I could find were forums where people said that their side effects lasted up to a year. I couldn't possibly stand feeling that way for that long!! BUT. After the third week, all symptoms started disappearing at a surprisingly fast pace, and I am now in my second month and still symptom free! Now I'm really starting to enjoy the benefits of taking a daily pill instead of a monthly infusion (Tysabri) and my life feels so much simpler now. So: don't despair if you're experiencing side effects! They do go away and Gilenya is so worth it. I feel like I got a huge part of my life back by not having to make regular visits to the hospital.

Italianprincess

@Italianprincess

I have been taking gilenya for 5 years now it is amazing for me. Just know everyone is different and DON'T MISS A DOSE THAT'S THE KEY #!!! Sending best wishes for you as well god bless

janeg86

@janeg86

Hi All im new to the site im also on gilenya for 2 and a half yrs with one relapse within first 5 months but nothing since thankfully im just coming to terms with the fact children will never be an option with my ms having bedn so severe at the start i couldnt do it to my family or myself x

Stumbler

@Stumbler

Hi @janeg86 and welcome. Obviously, it is your choice whether to ignore any maternal instincts, although the forum motto is "MS doesn't mean giving up on your ambitions, just rethinking how to achieve them." You have MS, MS doesn't have you. Just never say never. :wink:

Monica2015

@Monica2015

@janeg86, as @stumbler says, it's ultimately your prerogative. However, just to give another perspective, I was diagnosed a few months post having my son. I have experienced 71 relapses subsequently. I will not bore you with the details thereof, but as you can imagine, they have been extremely disabling at times. Nonetheless, whilst I had my child prior to diagnosis, and it's been an extreme struggle at times, I've managed, just as many other mothers have on this site. You have experienced one episode, have swiftly taken medication, which I chose not to for nearly 11 years, until recently, and therefore have every reason to hope the MS will be under control and you can lead a healthy life. I cannot see any reason for giving up your dreams, at what I presume, is a young age, unless there are insurmountable reasons for so doing. I was forced to do so given the severity of the relentless nature of my relapses, otherwise I would not have dreamed of not attempting to provide my son with a sibling. It took me around 2 years to come to terms with this decision so understand what you are saying. However, just attempting to convey that there may be a good chance that you will remain fully well, especially given the data re gilenya's efficacy. I myself took Lemtrada late last year, and it's still early days, but I am walking still as I was (just about) prior to treatment, but not for long distances etc. I was not incapacitated as the Neuro had first envisaged whilst looking at the numerous lesions, Wright were akin to drawing dot to dot. It is your decision, but do please ensure its an informed decision so you have no regrets in the future... Good luck!

Sissinite

@Sissinite

Dear...I used both. I started with Copaxone at the beginning. For me, it was a disaster.....I had relapses unless I was using cortisone. I then had for 5 years Tysabri (a blessing) and since 2014 Gylenia. I'm really fine with it, the only side effect so far is a little messing in my blood test, mostly liver marks, but not that high.

therese

@therese

Hi, I was diagnosed October 2015 and started on Gilenya November 2015. The only side effect I am experiencing are headaches. Outside of that nothing else and I haven't experienced a relapse since starting on Gilenya.

TheBeeOfNW

@TheBeeOfNW

Hello, my first disease modifying med was Gilenya, which I began just after being diagnosed, in February 2015 (1 year and 2 months ago at age 48). In my experience, Gilenya is tolerable but not perfect. A review of the year in case it helps anyone... We all know about the tedious Gilenya start. I had mild hair loss for the first couple months but then my hair went back to normal. My lymphocytes have run at 0.3 all year (just a bit above the 0.2 cut off mark). I am told that I am at risk for an opportunistic infection like shingles or herpes, but so far so good. Supposedly your lymphocytes are hiding away in your lymph nodes and will return if you stop Gilenya. My MRI's done 7 months after beginning the drug showed three new T-Spine lesions. Not crazy but not perfect either because until then only my C-Spine showed lesions. The new lesions were possibly from before I was fully protected. My next MRI's will be at 1.5 years on Gilenya, July 2016. A recent eye (retina) exam at a research hospital showed my left macula is thickening. It is not so thick that I need to stop but it is above normal now and I am being followed for that because it is a known Gilenya issue. Over time, I have adapted to Gilenya but it still gives me a vague feeling of a haze or malaise and makes me feel not quite myself. Positives -- unlike some others, my lifelong migraines are better on Gilenya. Also I have not had any GI problems even though I have a long history of those as well. I am considering changing drugs in July depending upon what my MRI's show but I still think Gilenya was a fair choice for this past year. No drug is perfect and I want to thank the folks on this site who encouraged me to give Gilenya a fair chance. I am older than the average patient so that may be a factor.