[barb02]

Just saw on the CNN medical news site that the FDA has approved finglimod -- the first oral MS drug. They are calling it gilenya. I have mixed feelings about this. I am glad that it has been approved, but nervous about trying a new treatment given my past history with the CRAB's and tysabri. I know the last time I saw my neuro he had mixed feelings about putting me on any new treatment considering my history and the fact that I have been relatively stable.

So who is considering trying it?

[Debbie D]

My neuro said it would be approved by the 21st...he was close.

It is good that it's oral...there are side effects, but I know the neuros will watch carefully for anything that pops up...
I might think those on Tysabri would go for it...I have a feeling that once more oral meds are on the market Tysabri will fade away...

Not sure about trying it. I don't have a prob. with Copaxone, and the costs for fingolimod are rumored to be around $30K/year

[Koala77]

Newsbot reported this too.

Here's a copy: http://news.yahoo.com/s/ap/20100922/...d_novartis_ms_...

From what I can see the main side effects appear to be macular edema (swelling of the retina), and bradycardia (slow heart rate). I'd like to know a lot more about the side effects, especially what it does to the eyes, before I made a decision.

[Kitty]

I also heard that it can cause melanomas. I wish I could remember where I read that.

Why do all these new meds have to have such dire side effects?

[Nali]

I'm going to pass on this one, too.
Liver enzymes need to be monitored as well.

http://www.webmd.com/multiple-sclero...g-gets-fda-nod

[Nali]

Originally Posted by Kitty

I also heard that it can cause melanomas. I wish I could remember where I read that.

Why do all these new meds have to have such dire side effects?

Exactly! Why gives us a medication that is going to make us sicker? It's not a cure, so why market it as a solution?

[Natalie8]

I'm probably going to try it in a few months once I hit the Tysabri 24 dose mark. PML seems a lot scarier to me then this. I can't tolerate copaxone or interferons. There have been cases of skin cancer on Gilenya -- not melanoma but basal cell carcinoma (which incidentally is not as dire as melanoma which can spread throughout your body). I think on this drug you will just have to watch your skin very closely and get regular full body scans from the dermatologist AND see an eye doctor for regular check ups. As far as damage to the liver can't the interferons and Tysabri also do a serious number on the liver? I've been on Tysabri for 2 years and my liver enzymes haven't changed one bit. They are the same numbers as when I started. I'm hoping I have a strong liver that can process this drug too. If I go on it, I will report back. Honestly I am more worried about the daily side effects which they list as headache, fatigue, flu, and diarrhea. I can't take any kind of flu like side effects--that just depresses me.

[Lady]

People have been looking for an oral DMD for many years. Some can't take the injectables anymore, so they get infused with Tysabri or try Novantrone or Cytoxan, etc.

So an oral drug may tempt a lot of people. Not me, but many will be switching to this oral pill. Biogen has a lot to lose in this market.

Many Big Pharma companies will try to copy an oral pill, but the cost seems to be the same as the injectables. Not fair to so many people. I heard it will be available around March 2011. I don't remember where I read that.

All drugs have some side effects. Some worse than others. Death is more than a side effect, IMO. They need a safe oral pill with no side effects, one that will be much more effective than those made so far. JMO

Thanks for sharing this information. Neuros can now add another DMD to their medical bag.

Anyone on this forum that is on this drug from the Clinical trials? Has it helped?

[EddieF]

Just spoke with someone about it. It blocks/reduces the white cells that make up your immune system by 70-80%. Effects production in lymph nodes. Also has heart, lung? and other neg. possible receptor effects(I forget). It was a long phonecall and was 1st thing we covered so the above info isn't spot on but it's close. Sounds like something I'd take at say 1/4 dose along with Ty if possible. If I could lower my white count by say 25%, I'd try that. Am I totally off saying it sounds like a chemo drug?

[Koala77]

Originally Posted by EddieF

Just spoke with someone about it. It blocks/reduces the white cells that make up your immune system by 70-80%. ..............

If that's correct Eddie, then reducing our white cell count by 70-80% sounds pretty scary to me.

White cells are our body's main means of fighting infection, and with a reduction that large, the medication would be inducing leukemia in the person taking it, leaving them open to potentially life threatening infections.

For me, the negatives for this medication are piling up fast.