6 infusions, not 6 months.

BTW---I am very approving that you are considering the RISK vs BENEFIT profile before starting Ty. Its a very personal analysis. I to calculated the risk wit duration and they were reporting that the overall risk was low and there was no proof it increased with duration. It was driving me crazy when they were saying that, because the numbers did prove it was increasing with duration. The would always report the overall risk...And there were no PML cases in the first 12 infusions? Which just buffered the risk at 2 years. :(
Oh that made me MAD!!!

Its a Risk vs Benefit analysis. In the journal Multiple Sclerosis a group of neurologist published Best Practices for Selecting Patients for Tysabri Treatment....you might be interested in reading it.

http://www.dailystrength.org/groups/tysabri-users/discussions/messages/8566357.

And in the Tysabri Users group I was calculating odds of PML when they were reporting that information with the uses. They have since stopped reporting it...and released they will not report it or confirm or deny anything that is reported. PISS ME OFF!!!!
But I was watching it!

http://www.dailystrength.org/groups/tysabri-users/news/page-2

Ty usage reported as of 6/09
61,200 patients have been treated with TY.

30,600 patients have received at least one year of TY
18,400 patients have recieved at least 18 months of TY
10,000 patients have received at least 24 months of Ty



Current PMLOdds: as of 7/24/09

# of infusions(month/year PML)

29(7/29),30(6/09),34(6/09),35(6/09),24(5/09),31(4/09),12(2/09),
26(12/08),14(10/08),14(7/08),17(7/08)



12 months from 7/08 to 7/09

Less than 1 year(61,200 -30,600=30,600) people using Ty
Less Than 1 Year..............0 in 30,600 (0.0%)
At least 1 year 11/30,600.....1 in 2,782 (0.04%)
12-18 months(30,600-18,400=12,200) people using Ty
12-18 months..... 4/12200......1 in 2,050 ( 0.03 %)
At least 18 months 7/18,400 1 in 2,629 (0.04%)
18-24 Months(18,400 10,000= 8400)..1 in 8,400 (0.01%)
At least 24 months 7/10,000 1 in 1,429 (0.07%)
Total 11/61,200................. ~ 1 in 5,564 (0.02%)

You can covert it to 1 in # odds, I'm certain. I just left it at %

If you expand the new section of the Tysabri Group, I have posted all I have on the PML cases. I post it in the news section because some don't like to see it. You have to scroll down to see all the articles & odds.

Oh by the way, a person in the group has written her doc said a blood test would be coming out soon, within about 8 months.

The blood test would determine if a person has the JC virus that lies dormant in some people, it harmless while the immune system contains it, but if it mutates into a virus that affects the brain and the person is taking Tysabri, PML can result.

There have been previous studies to determine if the concentration of of JC virus in the blood,could predict if someone would get PML...But nothing panned out on those studies, because some who had the JC virus got PML and some who had the JC virus did not?

But now they are looking at the test differently. They predict that about 50% of the population has the JC virus lying dormant and it could turn into PML with Tysabri. Without immune suppression, its just a harmless virus in humans. With immune suppression it can become fatal...

Now they are using the Blood test to determine which people have the JC virus, not predicting if PML will occur. If the person has the virus, they could eventually get PML in future use of TY and they are switched to something else.. If the person DOES'T have the JC virus they are not at risk for PML.
Those people without the JC virus would be one of the 50% of the population that could use Tysabri for more than 12 infusion without the risk of PML.

So whatever you decide, keep your eyes open for that blood test within the year. I'm glad you are critically looking at the odds.

I didn't check your number, btw. I trust them. I too have wondered why MS qualifies as an orphan disease for federal research funding when it is so prevelant. In the past when diagnosing procedures were not as good, I can understand why then it was an orphan disease, but I don't quite understand it now....
btw I read an article, don't quote me on it, because I am just going by memory......
The largest group increasing the rate of MS is middle age woman. But the median age of MS is getting lower, not because the bulk of MS is at a lower age...the average is middle age woman. The median is getting younger as a few are being diagnosed at a very young age.....but the average is middle age.
You understand mean,average and median. I'm sure. So you understand that article I read. MS is increasing, but it is increasing with middle age woman...I'm guessing, like me, technology wasn't available to diagnose them when they were young & meds have only been around for 20 years, so there was nothing that could be done IF they were diagnosed. So it wasn't a priority to diagnose them & start them on meds. So they were not diagnosed unless it was very obvious.Now there are meds & the technology exists to diagnose them, so they (me) are finally being diagnosed.The increase in MS is the people who are finally being diagnosed now, but would have been dx at an earlier age if the MRI had existed when they were younger.

As far as your personal Risk vs Benifit analysis, I would get copies of your MRI to see if it warranted the Risk of Ty right now, because clinical symptoms alone are not enough to make the decision..

interesting article to read, in it it says how many lesions form that are asymptomatic, have no clinical symptoms but aree forming and will cause future issues.

http://www.creditcards-onthego.com/MS.pdf

And the Tysabri Breaking news article here...
http://app2.e2ma.net/campaign/31451.748c4f23ddf69d00cfbe3c647d0a6ea6#News

Tysabri works different from the than the interferons like Rebif or copaxone or immune suppresants like Novatrone. Read the above articles, it does work different, but STILL a person personal RISK vs BENEFITS must be considered. There are som that get so much benefit from it, that the risk is irrelevant....but there are others wjo do not get that much benefit from it compared to other safer treatments, that the RISK becomes very important to consider and consider it continuously while on TY.

It causes conflict on the board when some don't understand its a RISK versus BENEFIT analysis and its individual for each person considering or already using Tysabri.

If you have already built up antibodies against Rebif.

Rebif & Avonnex are interferon 1a which you have anti bodies to.

There is betaseron is interferon 1b a different substance than rebif, but still an interferon.

And there is Copaxone which is glutimar acitate, not an interferon, it works different from the interferons, but they are all 30% effective in reducing relapses, while I believe Tysabri is 60% effective at reducing relapses.

There have been studies, that people can "transiently" develop antibodies but wit continued use the positive antibodies resolve. And the some develope permenat antibodies against a medication. I don't know which kind of antibodies you have formed against Rebif, so I don't know if you can go back to Rebif????

Best Practice Patien selection for Tysabri use.

http://www.dailystrength.org/groups/tysabri-users/discussions/messages/8566357

The above link didn't work, so here it is again.

27 PML cases would be fore everyone that had used Tysabri for more than 12 infusionsd. I am uncertain wher you have gotten the usage number and why you are using 2+ years...so you calculation of current PML risk is not accurate, it is less grim than your calculations show... but still its getting higher with 3+years....

Since Biogen is no longer releasing PML incidents or current Tysabri use, I don't think it can be calculated. The last time the data was available to calculate it was 6/09. We can assume the odds of PML have become greater since then, or Biogen would be open about the numbers, which they currently are not. They(Biogen) just reported when they stopped providing the information to calculate the odds...they would rather focus on the benefits rather that the risk of PML.