Anyone else on FTY720?

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Anyone else on FTY720?

Postby trleslie » Mon Jun 11, 2007 1:52 pm

Hello
I have been on FTY for 6 months. Have had very good success but one big concern. I am getting these spots on my eyes or floaters. I know i never had them so bad or at all before but my Neuro insists it is irrelevant and nothing to be concerned about. I'm not so sure.
Anyone else on it and noticed anything like this?
Thanks for your thoughts
Travis
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Postby carolew » Mon Jun 11, 2007 2:50 pm

Hello Trleslie,
I have been waiting to hear from someone on FTY720 for the longest time. I am on the study but I am sure that I am taking the placebo. I have no side-effects what so ever.
You know, everybody can get floaters and the major complication that they are looking for is macular degeneration. You must be getting regular eye exam with the opthalmologist, no? they know if your floaters are a concern or not. They can see the back of our eyes so well.
Keep us posted PLEASE, I need to know if this drug works or not. Good luck with your eye problem. Carole
PS, your must be on the study too, are you not?
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Postby trleslie » Mon Jun 11, 2007 2:55 pm

Thanks for your thoughts, I definately had all the side effects when i started the drug so i am quite sure i am on the real thing. Sorry to hear you are likely on the placebo. As for the eye thing, yes even the opthalmologist says its nothing, just a bit a concerned as they seem to get worse each month and i never had them before i started on this drug. Just seemed a bit too coincidental.
As for it working i think it has, i have had one little attack on it, but minor and very much feel my thinking has improved, both clarity and mood. Other symptoms have improved as well. But the congnitive has been almost miraculous.
Thanks
Travis
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Postby carolew » Thu Jun 14, 2007 6:47 am

Wow, I hope you continue to do well and that your eyes will settle down.
good luck Travis, Carole ps keep us posted ok?
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FTY720 and vitreous floaters?

Postby Smilingface » Thu Jul 12, 2007 1:55 pm

Hello! I'm just back from a neuro visit and was told I may have an opportunity to enter a FTY270 in the next few months. To me that's good news about the drug because it means it is showing promise not only for RRMS but for PPMS, which is my diagnosis. What do we know about the mechanism of FTY270? How does it modulate T cells to keep them out of the CNS? Floaters in the eye occur when the vitreous jelly of the eye condensates. Think of it as lines in a bowl of jello. The occurrence can be age related(over age 60 or so) or can occur from sudden impact to the eye. The tricky part of the impact cause is that it can occur years ago and effect your eyes today. For example if you are 35, your big brother bonked you over the head with brick when you were 5 you could just now develop a floater. Or you could have been in a car wreck 5 years ago and the floater just occurred. Now back to connection to FTY270, unless we can connect it to vitreous cells, I would vote for "it is a coincidence"! My problem with considering the trial is that I don't want the placebo!
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Postby Lyon » Thu Jul 12, 2007 3:04 pm

Hi Sf,
Smilingface wrote:My problem with considering the trial is that I don't want the placebo!
No one can blame you but there aren't a lot of options for PPMS. With that in mind, if you consider the risk of side effects acceptible, you might view entrance into the clinical trial as a situation in which you only stand to gain.....and if you end up on the placebo you are no worse off.

Hopefully you'll find the following link informative.
Bob

http://www.medicalnewstoday.com/medical ... wsid=26611
FTY720 is a once-daily oral medication with a novel mode of action offering the potential of an innovative approach to MS treatment. It is the first sphingosine-1-phosphate (S1P) receptor modulator.

FTY720 differs from currently approved treatments because it is the only medication that binds the receptors of S1P, present on the surface of lymphocytes, which are a subpopulation of white blood cells. In MS, lymphocytes circulating in the central nervous system (e.g. the brain and spinal cord) attack the myelin sheath that surrounds and protects nerve fibers (axons) which are responsible for transmitting nerve signals to other parts of the body.

As a consequence of receptor binding, the lymphocytes can no longer respond to the molecule that signals them to circulate to sites of inflammation in the body and they stay in the lymph nodes. However, the lymphocytes remain functional and may still be activated within the lymph nodes as part of the immune response.
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Postby bromley » Fri Jul 13, 2007 2:13 am

SF,

Attached is an MS discussion with Dr Freedman (which I have posted before). In one of the two parts he talks about FTY720. He says that in addition to its efficacy in reducing relapses / inflammation it has possibly promoted some repair - that, I imagine, is why it is to be tested on patients with PP MS.

Ian

http://www.mssociety.ca/en/research/default.htm
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Postby Lyon » Fri Jul 13, 2007 4:40 pm

Listening to it now Ian, thanks!

I don't remember you ever including this link before. Are you sure this doesn't involve a cognitive issue? :lol:
Bob
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Blog of someone in the trial

Postby dreddk » Sun Jul 22, 2007 4:42 pm

Not sure if anyones seen this blog but its Johan, who has been in the FTY 720 trial, and has seen some pretty dramatic improvements (EDSS 5.5 to 2.0 on the trial)
:D
http://blogger.xs4all.nl/jschurer/
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Re: Blog of someone in the trial

Postby CureOrBust » Wed Jul 25, 2007 4:59 am

dreddk wrote:...been in the FTY 720 trial, and has seen some pretty dramatic improvements (EDSS 5.5 to 2.0 on the trial)
I think it was bromley who spoke of hearing from a neuro that FTY-720 assists mylination? which could have something to do with the improvement (apart from its main mode of action)
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Postby bromley » Tue Jul 31, 2007 9:27 am

COB,

I posted this before - a phone in with Prof Freedman from March 2007. The relevant bit about FTY 720 is 7.10 - 8.16. He talks briefly about the drug possibly stimulating repair and plans for a trial in progressive MS.

Ian

http://www.mssociety.ca/en/audio/2007_M ... nce_P2.mp3
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