Gilenya Usage History

[Chilax]

Hi,

I was dx'd in October and will be starting Gilenya soon after I complete my pre-med tests (i.e., blood work, EKG, neuro-optholmologice exam, etc.).

Please share your Gilenya experience (safety / efficacy), especially if you were / are in a clinical trial. I will do the same after I start.

Thanks.

Al

[patientx]

You might want to have a look at the MSWorld forum:
http://www.msworld.org/forum/forumdisplay.php?f=23

It seems a number of users there are using or are considering using Gilenya. Also, if you search through older posts (if you register, you can do a search on "Fingolimod" in the medications sub-forum), there are some who were in the clinical trial.

[Chilax]

Thanks patientx. The neuro talk website (MS section) also had an active Gilenya forum - link below. Facebook also has a Gileyna support group.

Al


http://neurotalk.psychcentral.com/thread133405.html

[patientx]

Even though I'm not going on it in the near term, I asked about Gilenya the last time I was at the MS center. I don't think I can tell you anything you don't already know - those taking it need to get a baseline eye exam before starting, and there is some diminished lung function. One good point the neurologist made - if there is a problem from taking the medicine, it will clear from the system pretty quickly once you stop taking it - unlike, say Tysabri.

[Slumby]

My neuro, who prescribed Ampyra upon my request, wouldn't do Gilenya, saying "cancer" ... I read last night that it caused skin cancer in 8 of the clinical trial participants.
I think I still want this, though.

[Chilax]

I started Gilenya on Thursday 1/20. It was an uneventful six-our first dose observation period. My initial (baseline) heart rate was 72. It dropped down to 56 by the third hour and stayed that way for the remainder of the observation. My BP held steady at around 118/70 throughout most of the day. I checked by pulse yesterday and today & it was 65. My heart rate usually hovers around 70.

Al

[Gordon]

Why would you even consider this drug when it appears that CCSVI Is the cause of MS

[dreddk]

Why would you even consider this drug when it appears that CCSVI Is the cause of MS

Because it appears MS causes CCSVI not the other way around.

http://www.thisisms.com/ftopict-14530-beirut.html

[1hunter]

My big question is why would anyone use an injectable drug if there is an oral available? not being cocky just wondering..

[sou]

Perhaps because he/she doesn't want to get cancer?

A better question would be: Since there are already a lot of oral immune suppressants very well known since the 60s and the 70s, why use a new one that does no better?

[dreddk]

Perhaps because he/she doesn't want to get cancer?

A better question would be: Since there are already a lot of oral immune suppressants very well known since the 60s and the 70s, why use a new one that does no better?

Sou I'm not familiar with the other oral options you are referring to. In terms of efficacy, Gilenya, like Tysabri, has show evidence of preventing progression. The injectables are marginal in this effect (although they do reduce relapses).

It would appear that if one wants the most effective treatment one has to take higher risks. (My wife was on tysabri till she developed antibodies)

[Chilax]

I was diagnosed in November and the choices for my aggressive MS were Tysabri vs. Gilenya. I opted in consultation with my MS neuro for Gilenya based on a careful review of the Phase III trials (PML risk although very rare was a factor despite Tysabri's clinical study efficacy vs. Gilenya's).

I am in the CCSVI trial at Albany (Dr. Mehta) and will be having the procedure (treatment or sham) on Monday Feb. 21st.

Al

[IrinaS]

Al,

I had venoplasty (the treatment for CCSVI) done on December 22 in San Diego, CA. I have no improvements at all and not worsening. But I haven't had any worsening since three years ago when I started Tysabri
Currently, I'm in the process of switching from Tysabry to Gilenya. I believe the CCSVI is not the answer ( or at least not for all of us ) and that this new therapy is very promising.

Good luck to you in Albany. I'm interested to know how you tolerate this new drug, did you take anything else before that and anything else you find worth sharing.


Irina

[lmacalus]

Scheduled to start first dose on Tuesday... for those who seem to be against this, know that this is an excellent new option for those whom all other therapies have FAILED... Tysabri while an option, was ruled out when weighed against the risks & sadly had I started it Gillenia might no longer be an option!. Interferions while effective for many if not most were ineffective for me - that goes for Copaxone too- to with my relapse rates off the meds were = to on them and who could feel good about the shots & side effects with that poor result! I've read the incidence of skin cancer - it appears to be VERY low and it is unknown if the drug really caused this... I've abused the sun in my younger days & now live in So. CA... if any spots develop I'm far more likely to blame a long unprotected lifestyle vs a new drug. Moreover skin cancer is highly treatable and relatively non-fatal so I'm off to see how the first dose goes ;o)
Thanks to the others for the posts - let's stay in-touch & feel better!
Laura

[Chilax]

Laura,

Based on the Gilenya Phase III study the skin cancer occurrences were way too few to include in any FDA warning. The majority were basal cell (not as severe as melanoma) & those few cases were treated by excising the local spot. However, the skin cancer may not have been related to Gilenya. I did recently get a dermatologist baseline just in case - but I am not too concerned.

Al


Irina,

Gilenya is the first DMD I have been on - 1 week, since 1/20 & no adverse effects or otherwise thus far. I am hoping G stops / slows down the disease progression & enhancing T2 lesions. Good luck with your switch to Gilenya - I hope it works!
It appears from the anecdotal info. on CCSVI treatment some people experience improvements & others are unchanged. I will update my Albany Clinical trial when I go in 3 weeks, although I won't know if I get the venoplasty until I have been unblinded.

Al