Just got the news

[kewi1976]

I tested positive for the JVC virus...I have been on injections for so long that I never really considered or looked in Ty. But after a few bad bouts with the injections, Ty may be my last option for DMD.

So is there anyone out there that is JVC positive and taking Ty??

[Tomjadg]

Yes

You will find the majority is +.

[moolk]

JCV+ too

I am JCV+ and I just started Tysabri. My doctor will only let me stay on it for 1-2 years because of the risk of brain infection. We are hoping that something new will be available by that time. I've only had one infusion so I can't tell if it is working for me or not... but hoping! Best of luck to you!

[Scooter24]

There are a number of us who are + JCV and have been taking it for over 2 yrs. It has helped me quite a bit with energy, have had no activity or new lesions show up on MRI. I have no plans on stopping it, I am willing to take what I consider a slight risk in exchange for improved life while taking Ty.

If for some reason other than change in my condition or evidence of beginning of PML I will not stop or allow my dr to take me off of it.

[Redwings]

I have no plans on stopping it, I am willing to take what I consider a slight risk in exchange for improved life while taking Ty.

Scooter, did you see my post in the Tysabri subforum?

In Part 3 of the YouTube video "Wellness & Multiple Sclerosis: Why It Matters," Dr. Timothy Vollmer of the Rocky Mountain MS Center gives the risk of PML for a person who is JCV+ with a history of chemotherapy and has been on Tysabri for 3 years to be as high as 1 in 80. That's eighty, not eight hundred. And that's not a slight risk.

[Scooter24]

Redwings- I have seen and read other % figures, more to the tune of 1 in 240- 250 If I remember correctly. I have also read many places were Dr. Vollmer's opinions have greatly disagreed with other dr's opinions, he is one dr and is not the one know all expert on MS.

If I may ask you a question, Did I not read some where on this site that you do not have MS?

[Redwings]

Hi Scooter:
I agree with you that Dr. Vollmer's views are sometimes out of step with other MS practitioners, and that does have to be taken into consideration. On the other hand, he isn't a lone wolf charlatan with no credibility, and that has to be taken into consideration, too. And I also agree that outliers have to be removed from the data set in coming up with valid means of comparison.

However, Biogen's own numbers aren't that much different than Dr. Vollmer's in the video or from the numbers poster beadyeyes gave for months 25-48 in the thread in the Tysabri subforum.

According to Biogen, published July 10, 2012:
Current as of July 3, 2012, there have been 264 confirmed cases of PML associated with Tysabri. There are risk estimate figures that correspond to approximately 1 in 240-250, but they're calculated only for length of treatment, which is only one risk factor.

For patients having all three known risk factors, the risk is higher. The three risk factors are:
1) Duration of treatment, especially beyond 2 years
2) Immunosuppressant use prior to Tysabri
3) JCV positive status

"Patients with all three known risk factors have an estimated risk of PML of 11/1,000." That's 1.1 per 100 -- not much different than Dr. Vollmer's 1 in 80 (which he specified is for chemotherapy patients) and the 1 in 128 for immunosuppressant patients given in the other thread.

Dr. Vollmer's opinions aside, that risk estimate came directly from Biogen two weeks ago. For you, it warrants another look at the figures you got from your neuro and Biogen. And it probably warrants another look at what constitutes a "slight" risk. (It doesn't, though, imply what you should do about the risk.) For anyone else interested in Tysabri, it highlights the importance of knowing which risk level applies to individual situations.

[Scooter24]

Still works out to about 10 in 1,000 and that to me is a slight risk considering I was given a 35% of not surviving from my cancer 3 yrs ago and still have 2 more years to go on that and I have a greater chance of drowning in my bathtub.

I guess you would have to have MS to understand the reasoning of staying on TY and leading a better life than being on Avonex or copaxone and feeling like crap 7 days a week or being on Beta which they now say may not stop progression at all.

Also 70% of those getting PML survive with only 30 % getting a greater disability than prior to it. I am checked every 6months for signs of PML via brain MRI which is considered the best way of detecting it by FDA and biogen.

[Redwings]

Points well taken, all, Scooter. But my posts are in response to your questions about numbers: your question about where another poster got her numbers because the risk cited was higher than what you'd been given, and your question about the reliability of a similar risk estimate I supplied from another source. When you said your risk estimate of ~1 in 250 came from Biogen, Biogen's published estimate is different -- ~ 1 in 100 (and yes, that "still works out to about 10 in 1000" ). That's important information for people following Tysabri threads and your questions about risk, because they often don't know where else to get information.

My posts on this topic aren't about why a person chooses or stays on a medication. They're about knowing what the best risk estimates are (the objective) so those choices can be made (the subjective).

But if you want to change the subject to relative risk and why people make the choices they do, that's important, too. I totally get where you're coming from.

I have NMO. More often than in MS, NMO directly kills people and can do it in a matter of days. The outcomes in NMO are generally worse than in MS. I've been on 14 different medications (including several chemo agents and all but one drug that you mentioned) plus plasmapheresis. I've been on meds, and assumed risks, that scared doctors to the point that they referred me to someone else (i.e., dumped me as a patient because they wouldn't assume the risks) or wouldn't take my case at all. I have lived, and do, with not just theoretical risks of a whole host of side effects, but actual damage from the drugs. None of my options are good.

So I understand your position about the interpretation and assumption of risk. But the discussion still comes back to my original purpose of clarifying as much as possible what the risks actually are so that choices can be made on those "facts," and not an error or disregarding of the level of risk just because it's unpleasant.

Of course, risk isn't reality, but we make the best decisions we can based on the information available. For someone considering or already on Tysabri, there's a difference in risk in having one known risk factor vs. two vs. all three. No matter what choices a person makes, a truly informed decision can't be made based on faulty data. And isn't reliability of data the reason you asked in another thread where the poster's risk estimates came from?

[KyleW]

\I am checked every 6months for signs of PML via brain MRI which is considered the best way of detecting it by FDA and biogen.

Per my doc, they now want to check every 4 months. I'm not sure who "they" are; my doc? the FDA? Biogen IDEC?

In any case I had new pics taken yesterday. Previous pics were taken in March.

Kyle (JCV -)

[Scooter24]

Strange they are doing it that often and you are JCV neg.