Please be advised that the companies (Biogen & Elan) indicated that they
might consider raising the price of Tysabri, given recent price increases nearly across the board of existing therapies.
Currently, Tysabri costs approximately $2184 per vial for an annual cost of approximately $28,400 (for 13 infusions a year). However, consider the following...By comparison, pricing for competing therapies were as follows: $16,608 (Avonex), $20,553 (Rebif), $16,026 (Copaxone), and $17,827 (Betaseron), and some of them recently raised their prices.
So in essence, Tysabri is less than twice the cost of the older generation drugs (the ABCRs), but more than twice as effective (the efficacies of the ABCRs in preventing for relapses, there are accumulating disabilities, and slowing the disease process down ranges from 29% to 34% respectively, whereas Tysabri's efficacy is a whopping 67%! Plus, when one considers the fact that relapses are reduced with Tysabri therapy, the insurance companies know that the costs of treating each relapse with hospitalizations, Solu-Medrol, doctor visits, physical therapy, etc., are also being greatly reduced.
I have had 21 Tysabri infusions so far since restarting the medication in October 2006, and since that time, I have not had a relapse and only slight disease progression (the slight disease progression is normal for me as I have had MS for 32 plus years). My neurologist and I both agree that without Tysabri, I would be bedridden by now, and I'm not, woo hoo!
I hope this information helps, and good luck to your mother... I'm sending you many supportive hugs,
All my best - Lauren :)
He just meant that there weren't any head to head trials. That is, the pharmaceutical was only compared against a placebo. However there have been since then, head to head trials, but I do not know if those trials included tysabri. I think it was just one of the CRAB's against another of the CRAB's.
There are a couple of things to consider if you want to change to tysabri. One is cost. My infusions are $7,200.00 a month, but I have a great health plan. If I didnt, tysabri would cost me $86,400.00 a year! But my insurance pays for it after I fulfill my deductible of $4,000.00 dollars. Secondly, you need to consider the danger. While tysabri has great benefits, it does carry the risk of death or severe physical impairment. You need to make sure that you can mentally handle that risk, because you do not want to worry your self do death.
Finally, because of the risk of PML, you need to make sure your neuro has other tysabri patients, and that he knows how to take care, and MONITOR tysabri patients. If he does not have experience with tysabri patients, do not change to tysabri.
I hope that helps, but as always, speak with your neurologist first before making any decision. Do not let your neurologist pressure you into taking tysabri. It is your life and your choice. I have taken tysabri for 6 months, and I feel like I did before MS. I am thankful for this drug, but I worry about all the risks. Take care of your self.
I was diagnosed with MS following a severe relapse. I went on Rebif immediately yet continued to have active symptoms for almost 6 moths. Following that, I experienced a series of minor relapses about one a month for another 6 months. MRI showed consistent disease progression and enhancing lesions.
Within three months of starting Tysabri, my active symptoms nearly complete disappeared, with all gone by 6 months. I have had no relapses, major or minor, in the 2 years since. MRI shows I am in complete remissions. I feel better today than in many years.
For me, this drug has been a miracle drug and I would not consider stopping treatment for any reason. It allows me to live a life without any measurable disability. Prior to starting on it, I had difficulty seeing, thinking (I do analysis for a living), and walking without balabnce problems.
No evidence my butt!
Our insurance's website had the breakdown of an infusion of Tysabri as such.
The claim from our hospital
Drugs $7651.50 (It actually costs about $2400 per month for Tysabri)
Other Services $336.00 (I believe this is just when nurse Holly pokes me with a needle and shoots the breeze with me)
Recovery Room $242.00 (This is no day spa or fine hotel, it's a chair in a cubbyhole amongst many other chairs in cubbyholes)
Drugs $19.00 (This I figure is the salt water they flush me with after)
I know I sound a bit bitter and I admit that I am. I have many side affects that I take drugs for and drugs for their side affects. I told the neurologist that I would not take it if the drug company did not assist in the cost post insurance because we have no extra money. I also stated that I would give it 6 months to a year and then decide whether I would continue on it. I have wanted to stop taking it a times when I felt aweful but so far I'm trudging(ok hobbling along)I do have to admit that as far as we know I have not been accumulating new lesions at the rate I was before. I recommend that you look at your personal needs and issues and progression and look at all of your options and be very frank with your doctors and when all is said and done do whats best in your opinion.
I hope all of you out there do wonderfully with your life and your choices cause GOD knows it's hard and we have to overcome more than the average person who is disease free. As my husband puts it, a person with MS is tougher than John Wayne ever was.
The amount quoted here as the cost of Tysabri are fairly spot on. I just wanted to add - if you dont have insurance or you cant afford your co-pay for Tysabri, Biogen has a great patient assistance program. They can only help with the cost of the Tysabri and not the cost of the mechanics of it, the infusion but it is a huge help. Dont hesitate to reach out if you need it.
A Tysabri MSer
I was supposed to start infusion this Wednesday, but the lady at the neurologist called yesterday and canceled my appointment because they are having trouble with my insurance company. I asked her how much it would be if I paid for it myself. She said to let her try somehting else. I was looking forward to it, I can barely walk, and my short term memory is shot. I tried the Low Dose Naltrexone but it didn't do anything. I took the last of the LDN last night.
As far as the chance of PML, like Jimmy Buffett says: I'd rather die while I'm living than live while I'm dead.
I have officially had my first infusion of Tysabri and for the first time in six (6) years my feet stopped "tingling", my MS hug lost bandwidth, and all I had was a nagging headache. So bring on the PML, I'll take that chance for "You look so good." Because for the first time in six (6) years I actually FELT so good.
Seriously, Biogen idec is before the FDA to have a blood test approved to detect if you have the virus that morphs into PML. So here is hoping they get the blood test.
The blood test HAS been approved, but it is not a sure thing. I started Tysabri in Feb. of this year and enrolled in the blood test study. I just got my results at my checkup last week and was informed that the test "did not detect JCV" (this is the virus that causes PML). As my doctor said, though, the test is probably 97-98% effective at best, and this does not mean that I will go through life without JCV. It is a pretty common virus that a majority of adults have, so chances are high that I will be exposed at some point.
What I would really like to hear are some less miraculous stories of Tysabri. I am not having the wondrous mind- and body-altering effect that everyone is describing here. In fact, I felt absolutely rotten after the first two doses. Finally, with the third dose, I felt OK after (though certainly not BETTER). And I am starting to realize that there are some things going on that I should have mentioned to the dr. last week, but didn't really think about them because they are not persistent or aren't that serious. For instnace, I am having leg pain. But it doesn't bother me much throughout the day; it instead seems to act up in the evenings/at night (when I am sitting more). I never thought of it when I was talking to him because I had no idea it could be a side effect (just read on Tysabri's own website that it is a symptom and don't remember reading that before). I had just assumed it was some of the typical MS-related pains that I have often experienced for the last 12-13 years. Now I know I need to mention it at my next infusion.
IDK. I just feel like I am still waiting for my magical moment of relief that so many others are saying they had right away and have had ever since.
The dr. and I agreed to keep me on it for up to 1 year and see how it goes. He was a little concerned and said most people don't have the severity of fatigue and flu-like responses that I have had (I am not kidding you that after my first dose, I felt like I had contracted the worst flu ever . . . I ached everywhere so badly that even my eyelids hurt!). However, he still feels it is the best option for me at this point and wants to see me try it a little longer. I agreed because I know it lowers immunity and there was some nasty stuff gong around here at the time of my first dose, so I don't think I should totally judge it by that. Also, I'd like to wait and see what my next MRI is like in July since my one in January was super active.
Guess I am just wondering if anyone else had a slow start on it like I am having but has ultimately had a positive experience.