selkie wrote:Thanks for posting this Cece - if it was posted before, I missed it.
Gilenya is certainly not an option for me as I've had six retinal detachments (and surgeries). Since retinal detachment is one of the potential side effects of Gilenya, I agree with you completely : extreme caution is indicated. Blindness is not something I'm willing to risk for a drug that is not a cure.
Yes, Squiffy posted this news item the other day on the Gilenya Forum here under the title "Novartis investigating death possibly linked to Gilenya"
Here's the link:gilenya-f43/topic18724.html
The cool thing about Squiffy's posts is that the links to articles in them go directly to the Multiple Sclerosis Resource Centre (MSRC) in the UK, and when you get to the site you have a whole stream of Gilenya news articles to scroll down through. Each MS med, etc., has its own page of articles there. Cool.
Another point I wanted to make for you, selkie, is that I don't think "retinal detachment" is one of Gilenya's side effects, but you may be thinking about macular edema
(swelling of the retina). If I were you I would still be very concerned about a med that could potentially affect my vision, though. Six retinal detachments? Yikes! Hope you're doing okay now.
I posted on Squiffy's macular edema thread in the Gilenya Forum a while back, since I was diagnosed with ME many years ago (30?). Here's a link to that thread:"Gilenya may increase risk of macular edema in some patients"gilenya-f43/topic17850.html
And here's what I posted on that thread:
Yeah, my history of macular edema is one of the (many) reasons I'm going to have to decline my neuro's latest suggestion that I take Gilenya. My background also hits a few of the other main Warnings and Precautions listed in the prescribing information for Gilenya, which my neuro didn't notice.
From the drug info -
The Warnings and Precautions list 7 items including –
1. Cardiac Disorders (I have a family history of heart attacks.)
2. Macular Edema (I have a personal history of ME.)
3. Increase in blood pressure ( I have poorly controlled HBP.)
Drug Interactions: I take 1 of them – a beta blocker (I was taking 2 of the meds in the precautions at the time she suggested Gilenya, but just dropped the 2nd one.)
For anyone who is interested, here's the link to the Gilenya website:http://www.gilenya.com/index.jsp
If you scroll down to the bottom of Gilenya's home page you can click on the "Full Prescribing Information"
as well as the "Patient Medication Guide."
I have them both printed out right next to me with sections highlighted from when I was researching meds at my neuro's request.
I ended up producing a 4-page treatise on the reasons I'm not a good candidate for any of the meds at this time and sent it to my neuro.
I hope Gilenya turns out to be a good option for others, but this sort of surprising news is why I told her that I'm definitely not going to be first in line for such a new, unproven med - especially with my other medical conditions.