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198419 tn?1360242356

Gilenya Users: Past and Present

I've started posts in the past for our DMD users so we can easily use the search feature and bump them up and add on through the years.

Please add your name here:
name:
dx:
Gilenya (date)


34 Responses
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Avatar universal
Hello everyone,

The comments seem very positive.

Can anyone share the side effects please? Again, on the internet, there are some positive comments and also some pretty horrific one.
Thank you guys.
Helpful - 0
Avatar universal
i'm scheduled to start gilenya last week of Oct. frankly this past summer and last few years, for me, has been trying. and i'll be glad to get off rebif as long as gilenya doesnt' trip me up.

i know you asked start date, etc., though thought i'd chime in anyways.
Helpful - 0
198419 tn?1360242356
bump for new users, and for those looking for oral DMD experiences.


Please add your name here:
name:
dx:
Gilenya (date)

Helpful - 0
1337734 tn?1336234591
I hope so too! Keep us posted  :)
Deb
Helpful - 0
Avatar universal
Great to hear!! Yes I keep hearing good things about that medication and how people feel great on it and my doctor seems to think the same! Hopefully I can get through all the test I need to do in order to get on it, wanna knock it all out ASAP!
Helpful - 0
1337734 tn?1336234591
I have been on Gilenya for 9 months now and it has been GREAT!!! I have had MS for about 30 years. I did well until about 5 years ago when I went through several long term relapses that really took a permanent toll on my mobility. I was taking Copaxone at the time and just kept regressing. I was only able to way shord distances sung a Rollator walker.

I began taking Gilenya at the end of November and it has been an uphill journey ever since! I continue to show improvement in my 10 week evaluations at PT after years of decline! I can now walk long distances using a cane and short distances independently!!!

I am 55 years old and haven't felt this good in years. I have not gotten sick at all.

For me Gilenya has truly been a life saver :)

Deb
Helpful - 0
Avatar universal
Hello all! I was just recently diagnosed with relapse remitting MS on Aug 14th 2013, mild right now, few lesions on my brain and one on my lower spinal cord. My doc put me on the a 5 day IV infusion of steroids to get rid of all the numbness I have had for the last 2 months, finished that bad boy yup yesterday WHOO HOO! Now I go back to him on the 24th to talk about Gilenya. He was a big fan of this medicine when we talked briefly about the medication options out there. He told me once he puts his patients on this oral pill he ends up having to call them back in to see him, cause they feel so good HAH!!

After reading up on all the medication that is offered, this one seems to best fit me and I wanted to get everyone's opinion on it?! How long have you taken it, what are some of the side effects you have experienced on it since taken it?! What can you do on the meds?! What can you not do?! ETC....
Helpful - 0
Avatar universal
I was just recently diagnosed and am hopefully starting on Gilenya within the next few weeks...I'm also scheduled to have robotic outpatient surgery to remove some uterine fibroids...right now it's scheduled to start Gilenya and then two days later have the surgery.  Any thoughts on this?? Might it be better to have the surgery and start Gilenya afterwards? Anyone with a similar experience? Thanks.
Helpful - 0
198419 tn?1360242356
Excellent news! I'm so glad this was bumped. I think we are behind on all our DMD user lists!
-shell
Helpful - 0
1337734 tn?1336234591
I have been on Gilenya for 3 months now. I am going to have my checkups next week so I don't have any real data yet.

I can tell you that I feel so much better since starting the Gilenya. I have been healthy, no colds or illnesses at all. Although I still have difficulty walking, I really am doing better. I am getting around outside using my cane instead of a walker because my balance and strength have really improved! indoors, I am walking independently :)

So far, so good!!!
Helpful - 0
1983221 tn?1333506185
Bump

Helpful - 0
1710955 tn?1309446473
**bump**
Helpful - 0
1745395 tn?1342061753
I was put on Gilenya end of July.  I have experienced some of the small side effects such as some acne which is clearing up.  I really can't say that I've had the issues with fatigue due to the medication, everything seemed to just be the same for me.  I have some hair loss, but this started before being on the medication so could be due to stress, etc...  I don't have any itchiness, redness, or some of the other side effects you get with other DMDs, plus I don't have to worry about scar tissues and changing the injection sites so Gilenya works well for me.  Choosing a DMD is an individual decision, and you need to choose the one you feel most comfortable about using.
Helpful - 0
721523 tn?1331581802
I am still doing well on it.  I am glad that I started using it.  I have only really had one relapse on it and it was mild.  I did take steroids for it because I have got to chace my 3 little ones around.

Let us know what you decide.
Helpful - 0
1637739 tn?1371688706
Hi Gilenya users!  I am thinking of switching my DMD and am wondering what the latest news on Gilenya is.  It's been about a year since many of you have started it!  I would like to know what you think of it and how has worked for you so far.  

Jeny
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Tonight the Australian government announced that Gilenya was now on the PBS (public benefit scheme) which means that it is heavily subsidised and costs should (if memory serves) be approx $28 per script, $5 if your on a disability pension. It has been fast tracked because of the  'promising' results, got to love it!

Good luck everyone, i'm closely watching your experiences :-)

Cheers.............JJ
Helpful - 0
1045086 tn?1332126422
Just one clarification.  The interferons (Rebif, Avonex, Betaseron) and Copaxone are all classified as immunomodulators.  They don't suppress the immune systerm.  They cause a specific change in the way the immune system works in MS without changing the effectiveness of how the body responds to other threats.

Mary
Helpful - 0
559187 tn?1330782856
This drug is an immunosupprssant.  It suppresses your immune system by sequestering the lymphocytes in your lymph nodes so they aren't out running round reacting to everything our bodies have to fight off every day.  If the lympjhocytes are low, that means the drug is doing its job, no issue there if the rest of the CBC is normal.   Does it make us more susceptable to getting sick? My neuro says "not necessarily" but that the potential is there that when we do get sick it can be worse or take longer to recover from.  And keep in mind that the interferons (Rebif, Avonex, Betaseron) are immunosuppressants and carry similar risks.  

Each of our bodies is different and responds to surgery and viruses/colds differently.  You can have major surgery and come out with no issues of infection or have a relatively minor procedure and end up with an infection where they don't typically expect an infection to occur.  

I can only speak to my own experience with this drug keeping in mind I am nearly 50 (ughh) so MS and other possible health issues may come into play.   Maybe for you younger women/men who are otherwise healthy, may have no issues at all.  I am personally committed to staying on the drug until my neuro thinks that the risk outweighs the benefit and so far we are not even close to that being an issue.  

Just my 2-cents worth.
Helpful - 0
721523 tn?1331581802
The newer research shows that it is not as much of an immunosupressant as once thought.  My limphosite count was low.  I had major surgery and a child with the flu.  I never got sick.  
Helpful - 0
1475492 tn?1332884167
I have my MSologist appointment tomorrow and am growing anxious. I am curious about this medication. I suspect I don't qualify to take though with not having a spleen if issues involve the white cell count, they won't risk my getting an infection and not being able to fight it. :(
Helpful - 0
704043 tn?1298056844
hi- just telling it was doing me ok- it was around my 4th month- and my white count got tooo low- he said i was the one per cent-rare- that cant take it- so im fine its comming back up no problem- i sure hope it works 4 you all!!    hugs
Helpful - 0
559187 tn?1330782856
Absolutely.  We'll be seeing more as time goes on.  It's still a relatively new drug but I hope if they are on it that they share as well.  Everyone benefits from hearing what's new in MS therapy from first-hand experience.  

Julie
Helpful - 0
198419 tn?1360242356
Hi all -

Your right, Julie. Not many here on it yet. Can I ask you a favor? Can you (or any members on Gilenya) keep this discussion bumped up from time-to-time because I know we miss some who pass through and don't see it because it slips off the front page....

-Shell
Helpful - 0
1748105 tn?1314473206
Just got the beginning paperwork from my neuro for Gilenya. Looks like I will be starting this med soon. Here's to hoping for the best!
Helpful - 0
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