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Posted 5/23/2007 5:58 PM (GMT 0)
Hey, just wanted to say hello to everyone in my first post. I found this forum on Google and decided to join since I'm an active poster at another forum for diseases.

I'm a 20 year old female with Relapsing-Remitting Multiple Sclerosis. I was diagnosed in March of 2006. I've only had my first exacerbation, thank God. I was on Copaxone for the first 6 months of being diagnosed and then I was taken off because I experienced chronic hives all over my body. I wasn't on any medication for about 6 months after that and now I just started a new medication. It's an experimental drug called Fingolimod (FTY720). It's a daily pill which is doing pretty well so far!

Any questions, feel free to ask me!

Post Edited By Moderator (rhondab) : 5/23/2007 1:22:37 PM (GMT-6)

Posted 5/23/2007 6:12 PM (GMT 0)
Hi, dRaMa. I'm uppitycats here..and at braintalk. :)
Posted 5/23/2007 7:26 PM (GMT 0)
Hey dRaMa!

Welcome to the board! Sounds like u'll have loads of helpful info for our other members and hopefully we'll be able to offer u support and answer some questions as well.

I edited u'r post to remove the link. Please see forum rules before posting any links to other forums. Thanks a lot for u'r understanding...and again, welcome to the board!
Posted 5/23/2007 8:25 PM (GMT 0)
Thanks for the welcome. I wasn't posting the link trying to promote lol... I was just referring to another great forum that I post on... Oh well.
Posted 5/23/2007 11:42 PM (GMT 0)
Hi drama,

 

   Welcome!!  I've read about the FTY720, but have yet to meet anyone taking it before.  I hope it works really well for you.  You said it's good so far, how long have you been on it?  Any side effects? 

 

 

Kimber

Posted 5/24/2007 4:51 AM (GMT 0)
I've been on it for about 1 1/2 months. The first day of the dosage, we had to be monitored for 6 hours. They monitored our heart rate and blood pressure every so often. Something wasn't right at the end of the 6 hours because they said I wasn't meeting the standrads to leave yet. It is a blind study so they couldn't tell me what was wrong. I'm assuming it was that my heart rate was low because I was manually monitoring it myself and I read that the drug is known to lower the heart rate in the first dosage. about 30 minutes later they let me leave so I guess it wasn't that drastic. Other than that I haven't had any symptoms at all.
Posted 5/25/2007 2:56 AM (GMT 0)
Hi drama,

 

    That sounds great!  I hope you continue not to have any problems with it and it turns out to be a successful treatment.  How will they be monitoring you?  Sorry for all the questions, just quite excited about the idea of an oral treatment!

 

Kimber

Posted 5/25/2007 12:31 PM (GMT 0)
No problem, keep the questions rolling! haha I was pretty psyched up when I heard about an oral treatment too. Well, the first treatment I was monitored for 6 hours in their office. I have to check in with my doctor once a month to do my vitals and an EKG. Every 6 months I go to do a CT scan and MRI. Every 3 months, I visit an opthamologist and a pulmonologist. The study is for 2 years. It's all covered by the study so it's like a bunch of free visits! lol I don't mind at all.
Posted 5/25/2007 12:52 PM (GMT 0)
Hi dRaMa -

What type of MS have you been dx'd with, if you don't mind me asking? (DOH!  I just reread the post... DARN Brain I see you already told us! )I'm still not dx'd, but the dr's have been talking about the meds to me and no one has mentioned the FTY720. However I know they both went to a neurology conference a month or so ago and they may have more options the next time I see them. How bad has the MS affected your daily life at this time?

Thanks for the information.
Posted 5/28/2007 3:50 AM (GMT 0)
Denda,

Fingolimod is still in it's trial and error stage so it's not available to everyone. I'm part of the experimental study. If you're ever interested, you should as your doctor and maybe he/she is involved in a study as well.

The symptoms I experience daily are fatigue, pins and needles feeling in my heels and calves, and weakness in my right leg and right arm. My first exacerbation affected my right leg and arm so that's why they're both weak. Not much that anyone can tell, but I definetly can tell. I get very out of breath and exhausted when I walk a long distance so I just avoid it. I have a handicap parking decal and that's very helpful. I also get the pins and needles feeling in my feet and legs all the time but I'm used to it because I've been having it way before I was diagnosed.

Sometimes I wake up with blurred vision but it subsides quickly. My right hand and leg twitch sometimes too. If I'm stressed out, my symptoms worsen but it's just temporarily. On my best day, I seem perfectly fine to everyone so I don't have it that bad, thank God.

Hope I answered all of your questions.
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