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.

Just saw my neuro last Thursday and of course he would like to see me on a DMD. He was actually amazed at how well I was doing since I haven't been on any DMD's since 2004. :rolleyes: He recommended Tysabri or Gilenya, which are both viable options for those of us who cannot take interferons.

I went home and did some research. I personally can't see myself taking either one in the near future. Gilenya sounds wonderful but you should've heard my neuro rattle off the side effects: heart, lung, eye toxicity, elevated liver enzymes, melanoma, macular edema, shortness of breath, bronchitis, bradycardia, etc. Think I'm going to take my chances a bit longer and wait to see the long term studies on Gilenya.

I too am off all DMDs and simply cannot see myself jumping on any of the choices left to me. Scary to be on them, Scary to not be on them. :o

Next week i'll ask my neuro about G. I'm just worried about urine infections since i constantly get them as it is & antibiotics/septics make me itch.

Anyone know the effect (WBC?) difference between G and Novantrone?

I saw my neuro today to talk about Gilenya. He has been following the data of the 300 or so people who have been on the drug for 6 years and the couple of thousand who have been on it for 3 years. He said it doesn't look like UTI's are a big problem. But people get lots of respiratory infections. Also herpes infections are a problem but he is not worried because as he said "we have treatments for that but not for PML which you get on Tysabri". He said more people seem to be getting viral infections rather than bacterial infections. It has a different mechanism of immunosuppression than Tysabri.

He said only people with asthma or other chronic respiratory issues should avoid the drug. For those with healthy lungs he saw no evidence of damaging pulmonary effect during or after going off the drug. He also told me the data did NOT show any cardiotoxicity (that's different than the initial slowed heartrate). That doesn't mean it can't happen 10 years out...but we at least have some people 6 years out.
There were 6 cases of macular edema. In 5 it went away after the drug was stopped. One person was left with vision problems afterward but that patient was on the higher dose that is not being prescribed anymore. He said that most eye problems developed in the first 4 months.
He recommended dermatology checks regularly.
He likes what he has seen so far. Apparently my clinic is setting up 5-6 people to wait out the 6 hour first dose together--I guess it's similar to the infusion clinic when you get Tysabri. So you better hope you like the people you are stuck with for 6 hours!!! The funny thing is he is really a Tysabri and Avonex guy--not a shill for Novartis at all. He left it up to me to decide.
If I remember anything else he said I will let you know. :)
By the way he does not like cladribine because of high cancer risks and everyone in the clinic has a pool going about whether the FDA will ultimately reject it. Everyone says yes.

Thanks for the insightful information on Gilenya. I was dx'd in October and have opted for Gilenya over Tysabri. I have been trying to find any information on long-term users such as those in the clinical trials that have continued use so your post has been very helpful. Once I start Gilenya (early January) I will post my experience.

Thanks again.

Al

Good luck Al! If I was newly diagnosed I would choose Gilenya over Tysabri. Yes, please come back and tell us how you do. I'm on Tysabri now but will likely be switching to Gilenya in the spring. I love Tysabri but I'm almost at the 25 infusion mark (next week) and can't deal with the PML anxieties anymore.

Quite important info, I have asthma, as I'm sure many others have at varying degrees.

Thanks Natalie. When I did my research on Tysabri vs. Gilenya (read all the clinical trial data). It was a tough call because T has a better proven effectiveness track record & G appears very effective as well, albeit with less of a history. The slight PML risk of T vs. the G side effects swayed me away from T. Good luck on your future switch from T to G!

Al

Started on Gilenya
 

Started Gilenya 2 weeks ago. Sat in the dr's office for 6 hours to have my heart rate monitored. Apparently it dropped a few beats in the first hour. I honestly didn't even notice. Make sure to take something to do and some food!

I love taking the pill instead of the shots. The only problem is that I have been having problems walking for the past week!!! Makes me nervous. I'm so confused:confused:....is it my MS (from being off any meds for a month before starting G) or is it a side effect of the pill? I have an appt to see my neuro next week.

My co-pay is going to be the same as it was for Rebif. I was told that Novartis would be paying my co-pay for the first year I am on Gilenya. I have good insurance so this is good news for me.

I hope I don't have to go off of this because of my new symptoms. Time will tell

Lisa

I hope you don't have to go off of it either and that it works for you. It would be so nice to take a pill for MS, have it work with no horrible side effects.

I hope this is it for you.:hug:

Let us know how it goes.

[SIZE="5"]Do any of you know the efficacy of Gilenya compared to that of Tysabri?[/SIZE]