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Gilenya info from this week's talk
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Gilenya info from this week's talk

Gilenya notes
These are the key points that I took away from the Novartis presentation on Gilenya that I attended this week.  Is there anyone here besides Sarahsmom who is on Gilenya?  Let us know and perhaps you can add to this discussion.

The most important thing about the disease modifying therapy that we take is it must be one we will actually take and remain complaint for. That may be an injection or may need to be a pill.  Each person is different in their selections.

A key takeaway from this talk was that in clinical trials before a drug is released absolutely ever thing that goes wrong with the test subjects must be reported and is recorded as an adverse reaction.  The neurologist made the point if a test subject had a motorcycle accident, that must be reported even if it has nothing to do with the drug. Anything abnormal goes into the study results.

We have gone over these points before , but bear with me while I do a quick review.  These are the pre-treatment screening tests that most neurologists do, but they are not mandatory.

Cardiology review – Gilenya can cause a decreased heart rate on the first dose and remain depressed for a while, usually no more than 4 weeks.
Ophthalmologist – macular edema is a reported side effect, but the numbers of people on and off Gilenya are pretty equal when it comes to ME.    They have seen that ME starts 3-4 months after beginning Gilenya and that it is important to have this baseline exam.  Many people already have the beginning of ME, whether on Gilenya or not, and this is a good baseline exam to perform.  The risk of ME is higher if the patient has a history of diabetes or uveitis.

Chicken pox – there  were two deaths during the trials of Gilenya and they were both linked to people who did not have exposure to the chicken pox virus.  Patients are screened for this before starting Gilenya and can always be given the vaccine before beginning Gilenya.

Increased risk of infection on Gilenya comes from a decrease in white blood cells in some people.  It is important to be vigilant about infections.

Many neurologists also screen their patients for pulmonary function – this is especially important is you have a breathing disorder such as asthma or COPD – since breathing problems were also reported in the trials.

As with all of the other DMD’s except Copaxone, a screening for liver enzymes should be done and monitored, but  I didn’t write how often that should be performed.
Cancer risk on Gilenya was mentioned here in a question and I asked that specifically.  Two of the lab rats used to test Gilenya developed Melanoma, but they were on mega-doses that would never be given to human patients.  They said they are not seeing this problem in humans.
If you hope to become pregnant, they recommend that you be off Gilenya at least two months before they attempt to conceive.

A slide they showed talked about the effectiveness of vaccines and I believe it said tht they are sometimes only 50% effective if you are already on Gilenya. This is something to discuss with your neurologist.

There is no recommended clean-out period to get off another DMD before starting Gilenya but this neurologist said he recommends a two week period or so.  

It was a great presentation – check the Gilenya website to find one in your area.  The slides they use are easy to understand and packed full of useful information.  The patient advocate they brought to talk had a very powerful testimonial about Gilenya.  She has been dx’d since 2002 and was in the trials for fingolimod.  She was in a wheelchair and still deteriorating.   According to her story, Gilenya made most of her symptoms go away and she is now ambulatory and doing all the things she wants to do.  I will write more about her in a journal entry sometime soon – I would like to share how she seems to be the REAL FACE of MS that I have begged for in these talks.

Many people here worry about taking that first dose of Tysabri and I’m not sure if Biogen Idec offers a site for that, but Novartis has one specific to Gilenya - you might check it out at

Questions?   Be well, Lulu

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11 Comments Post a Comment
1740498 tn?1328966185
Thank you for sharing all of this!
198419 tn?1360245956
Lu! Thank you for taking the time to learn about this, and share with us!
This is the user list-post for Gilenya (incase they are offline and so not see your write-up here - we can hit them up):

721523 tn?1331585402
I am on Gilenya!  My personal experience is this:  I have only had one relapse that needed steroids, but it was post-partum.  However,  I tend to havemore day-to-day symptoms.  They are annoying, but they don't stay for long.  Here today and gone tomorrow.

The baby is crying, I have got to run.  Post more later.
572651 tn?1333939396
As I am rereading this I wish there was an edit function that I could add more information and correct a few typos.

I can't change the typos but here is the addition I thought of -

Because of the rats with Melanoma, most neuros also have patients examed by a dermatologist for skin cancers before beginning gilenya.

1816210 tn?1327358484
Thank you for this info Lulu.  I have a question, and maybe it's in your post- but my brain isn't functioning well today...  Is there any info about it's safety in the long term?  Is is a safer option than Tysabri for your heart, or otherwise?  

I would love to attend something like this, but so far I cannot find one being given in the Seattle area.

Thanks again!

1745395 tn?1342065353
Hello.  I am also on Gilenya.  

Many of us on Gilenya moved the time we take it to the evening.  The first week most of us feel really fatigued but this does lessen or go away.  About 6 weeks, there are some of us (myself included) that experienced some hair loss.  Others on Gilenya say that this stops around month 5.    Another side effect that seems common and I've experienced is some acne around month 2.  

The first dose is monitored in a care facility:  they take your blood pressure, and monitor your pulse sitting and standing every 15 minutes for 2 hours, then every half hour for 2 hours then once an hour for 2 hours.  Also they have a Gilenya facebook page.

Thank you lulu for all you do.

572651 tn?1333939396
Wildcat- did the hair loss stop for you?  I think Julie had that problem as well.  And the acne? I'm not sure I've heard that mentioned - did it also resolve on its own?
1253197 tn?1331212710
I know it is not gilenia, but the oral drug I am on in my trial is very similar and I have had a little hair loss. Just thought I would add this to the comments already shared.

Sarah x
1251333 tn?1445221815
Hiya! Thank you for the update.

I'm on Gilenya and experienced nightmarish fatigue.  What I find interesting is that when I asked my Novartis Nurse she said that they didn't have any reports of incredible fatigue in the studies but when I asked the Bioscrip nurse about the numbing fatigue - she said that almost all of their patients complained about the massive fatigue.

About the wash out:  I was told by the Novartis nurse that there was a 4 month wash out after Tysabri.  When I mentioned that to my neuro, she said that that is what they were saying but she thought a 2 month wash out would be fine.

Now - I have to say that of all the drugs I've been on - the Novartis nurse seemed to be the least informed of all the nurses for all of the drugs I have been on.  

Novartis sends a ton of information, which is nice.

I still have some fatigue but it's not nearly as oppressive as it was when I started the Gilenya.

Has anyone mentioned anything about skin changes?  I can't say that I've had increased acne (I've always had bad skin) but I've noticed patches of skin that are dry, scaly like with raised bumps.  They are approximately quarter sized and the hair is missing in those areas.  It might be nothing but I've been gradually getting more.

It's nice to get information since there aren't a lot of people on Gilenya yet.
572651 tn?1333939396
wildcat2x said that many on the gilenya have started taking it in the evening because of the fatigue issue.  When are you dosing yours?  

Those of you on Gilenya - be sure to report your problems to your doctors.  This drug is new enough that they need to compile patient notes on experiences.  

I'm really glad to read the experiences of those of you on gilenya - it's adding a lot to my knowledge base, not that I'll remember it in a few days! LOL
721523 tn?1331585402
I had the hair loss....bad!  It is 10 months now, and it has slowed to mostly normal.  I did start using thei Nioxin shampoo and conditioner.  IT definately helped!  My skin did not change.  My fatigue is bad some days, but I do have 3 small children and had a hysterectomy in May. who knows why I am so darn tired all of the time?  Oh well...
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