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)

[cainer]

hi  i havent started yet- lol i didnt understand the dmd- what can i say- go for eye examine tuesday,keep fingers crossed!  i cant wait!   but yeh i knew what the crab drugs were-lol
   thanks will post -hope i can get on it!!  hugs!  tick

[Sarahsmom46]

I am starting this coming Thursday.  I passed all the screenng exams and am ready to give this a try.  Let's keep in touch and share how we all are doing.  

J.

[opie74]

I started Dec 29th.  So far everything is going well!  I started 12 days after giving birth! After the 8 weeks it takes to truly get you white cell count down, I resisted the flu from my son.

[cainer]

  ah  such a pretty baby!    i get examine tomorrow- and will keep in touch!

[Sarahsmom46]

For me, this Thursday is just around the corner.  I got my leave approved today from work and am packing a little bag to keep myself busy and then i'm good to go.

Hey Opie, what time of the day do you take your "pill"?  I was wondering if you found mornings or evenings and different.  

I guess we are the pioneers in the group.  Let's keep everyone posted.

-Julie

[cainer]

well said my eyes ok- now i guess i wait-how long?  does this make any of you more tired than before, or better?  just anxious!!

[cainer]

well---  i start my first dose this comming thursday!!  there is something about thursday, it seems,lol!  i had just about thought well they arent going to put me on it- lol when i got it through the mail!!  its a 6 hr. thing at hospital, just for our benifit , if something would go wrong. slows your heart but hey- maybe we will live forever with this!! ha!!  will keep you informed!

[cainer]

hi  well took gilenya yesterday- stayed for 6 hr to moniter me- all went fine! in fact my blood pressure went up -weird guess it usually goes down some. and have taken another one a few hrs ago, its a piece of cake!  no more shots!  yeh!! me!!
well is everyone thats on this doing ok? any thing maybe any of us need to know?? in 3 months i do blood work- and eye test again just to check and see everything is ok.

[Sarahsmom46]

I've been on it since February and just got my first lab results back today.  My lymphocytes were extremely low, but thankfully my WBC was low normal, but normal.  My neuro's nurse told me to be diligentabout washing hands and staying waway from sick people. That is hard to do when I take public transportation, ha!

I have found that taking my daily dose at night before I go to bed.  This was after trial and error in that when I took it in the morning I felt flu-like for several hours.  At night, I seem to sleep through all that.  

Has anyone found the gilenya support nurses very helpful?  I am happy that they don't pester you as much as the nurses at Copaxone with all those phone calls and robotic discussions, but the gilenya one just called me once to see that I did my 6-hour observation dose and that I'm filling the script.  That was it.  

How is everyone else doing?  We are in such a uniqe situation being the first group to go on the oral meds other than those people in the clinical trials, so let's try to keep the communication open. It helps us and the rest of the group who may be prescribed this med in the future.  

Also, anyone who was in the clinicals would also have mouch to contribute.to us newbies.  

Hope you all are having a nice Friday evening.

Sarahsmom

[Sarahsmom46]

I've decided to go to another MS forum that has MSers taking Gilenya. It seems we just don't have but a few people here on it.  I found a few good places if anyone who is taking it is interested.

Julie

[vidalouise]

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!

[sllowe]

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

[Sarahsmom46]

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

[cainer]

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

[Sidesteps]

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. :(

[opie74]

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.  

[Sarahsmom46]

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.

[twopack]

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

[supermum_ms]

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

[jen673]

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

[opie74]

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.

[wildcat2x]

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.

[Needhelp16]

**bump**

[Mummy76]

Bump

[debgen]

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!!!

[sllowe]

Excellent news! I'm so glad this was bumped. I think we are behind on all our DMD user lists!
-shell