I don't necessarily think it is sad. Research costs money, lots of money. Just think of the years it took to produce this one particular drug and the trials it went through. That being said, I don't know that the 4000.00 per month price tag can be justified.

i'm not big on trying anything new. i'd like to sit tight and see how it affects those that do try it.

i just saw my neuro and we talked about it. i'm stable on C. i'm over 60 and i havn't had any flares. so i'm going to leave well enuf alone.

thanks for the info and links in these posts.

My neuro wanted to immediatly throw me on this pill, and I said "wait!" I want to see how others do first. I am very sensitive to meds, and have failed off of them all. I dont want to go on this pill and find out that six months later folks have kidney damage or melanomas, or cant recover from the drop in White cells. I think people who sign up for clinical trials are brave, and courageous. I simply am a chicken. I want to know what I am taking is safe, wont kill me six months down the road, and is going to work for me, as oppposed to just giving me the side effects and no benefit.

I still say its criminal to charge this much for this pill. shame on big pharma. shame. :(

are you saying one of these is chemotherapy?:confused:

Reality check.
 

Big Pharma, as we like to call it/them, is a business. Production cost is irrelevant. The composite parts for a Corvette might cost $8k, but GM sells it for $70k.

It's not unfair. It's how business is done. Buy low, sell high. Choose your euphemism.

Flame on!
Pete

my MD explained it in some round about terms and beat around the bush and then I spoke up and said "you mean this stuff basically gives you lukemia in order to fight off MS?!" and he got really quiet and then said "yes, but that is an over simplification of the process." he didnt defend it to me after that. Eeek! :eek:

The oral meds
 

I spoke to my doc about trying it and he wasn't too excited about it....due to the side affects. I hate the shots!!!!! My body is bruised and some days I don't know if I can find a spot of skin that isn't irritated and sore. But, from the look in the doc's eyes:rolleyes: think I'll wait a bit longer and see how others fare on it.

start Gilenya on friday
 

I have never been on a medication for MS. This will be my first. I was only diagnosed a few months ago and am nervous about it all. I ask my neurologist that if this drug is so great, why isn't he putting all his patiens on it? He said that if you are stable he does not want to take them off to try something new.So I guess that confirms again what your dr is saying. I am a little nervous to find out am I going to be one that does great on it or will I be one that has side effects. It better do miracles for me since I will be paying $2,000 month (my part after insurance and novartis pays their part) . That makes me have side effects just thinking about it.

Rightly so too. :eek:

Great thread folks. I've not had the 'talk' with my own neurologist, however over a year ago when I quit the DMDs I had said, "Call me when the oral drugs become available". No call from neuro, granted... I've not relapsed either since the first couple months of knowing him, so perhaps I've fallen off the profitable patient meter.

I do think this is a potentially wonderful medication for those who have not had success with DMDs or Ty, or other avenues of treatment, and I do wish you folks all the best going forward. :hug:

What disgusts me, and I'm sorry... how many millions are donated each year, public and private, for MS drug research???... is the cost of this medication. Bollocks I say! :mad: Where's the patient protection/funding down to the individual in catastrophic drug costs/coverage for this new medication?

It just makes me taste bile to think about it. Not because a new drug's been developed for market. That I think is awesome, even with potential side effects, because it does offer new options and choices for those who can't or couldn't tolerate other medications, but the cost is such a blatant cash grab out of the pockets of the sick, and their families in some cases. Revolting.

Has anyone or know anyone using it?
 

I was waiting for an oral but with it being so new, my neuro auggested that we take a wait and see approach. From what I have read the first dose has to be given in Dr.'s office so they can monitor it. I want an oral as well because these injectibles are killing me.