JCV index - different scales?

[Aviah]

I was looking for statistics connecting the results of the JCV index test to the PML risk and I got very confused. It seems that there are two different scales for the index: one that makes <0.2 negative and >0.4 positive, and possibly a second that makes <0.5 good and >1.5 bad.

Does anyone know what's up with those scales? How do they relate to each another and do they measure the same thing? For example, when someone says that his index is 3.71, does he mean 0.371 (borderline), or is he using the second measurement (which makes him a high positive)?

[LL60]

Aviah,

Hi and welcome. Not sure why no one has replied to your question.

I will give it a try.

If someone is 3.71 they are 3.71 and not .371 unless they miswrote their numbers.

There really isn't any information out there for those with "high" index numbers. The grafts available to us only go to >1.5. So someone who is 3.71 would indeed be classified as high. I was 4.1 at my first test, 6 months later the test came back "negative", which my doctor knew couldn't be right and insisted they retest, and it then came back as 3.4 with some excuse about it being the holidays and there were different people in the lab was why the incorrect results came back. He isn't sure just what the numbers mean anyway and was going to try to look into it on his end and have some more information for me at my next app. Which is in 2 weeks.

Your risk of PML centers around a lot things. Length of time on Tysabri, JCV status, if you had took other drugs that affect your immune system; recently they added the risk that the higher your index number the higher your risk. I have also read two articles on weight and risk, and I think they feel underweight people have a higher risk than those of normal weight. They started studying this because of the higher rates of PML in Europe.

As of Feb. 4th there have been 439 cases of PML related to being treated with Tysabri. The death rate stands at 23% - nothing seems to be changing that figure. About 123,000 people have been on this drug. PML is still rare. You have to adjust your risk and what you are willing to live with as information because available to you and your doctor. This is one of those times where you have to take the lead and find out all you can. I find more information on investment sites than medical sites. After all, it's big business and they want to make sure their stock holders are up to date!

I hope this answers your one question at least.

Are you on Tysabri? Thinking about starting it? The risk of just starting, with low index numbers and no other drugs that would affect your immune system, is pretty low. I think they are still saying it is like 1 in 10,000.

My number is more like 1 in 100. But I hold a lot of stock in quality of life. I have a great quality of life. I would not have that if I was not on Tysabri.
For today, I'm staying on it. I just had my 60th infusion.

[micheleann1127]

Thank you so much for your information. I just had my first infusion today. Thankfully no side effects yay! I have been trying to find information on my index and I was nervous because I thought my score seemed high and I could find no information! I'm 3.52. You've definitely eased my anxiety.

[golfore]

I think 3.52 is a very high number. No, I know it's high. If this is your 1st infusion I don't know how you would have a high number.

LL60,
All the stats about PML are mostly useless,,,, in my opinion. Some TY people are changing the dosing to every 6 or 8 weeks. Some of us take care of ourselves, some don't.

For me, my neuro is refusing to prescribe it for me any longer. My Titer is now 1.9 after 80 infusions. Your right about quality of life being important. I may look for another neuro who will prescribe it for my.

[Kimba22]

Thank you so much for your information. I just had my first infusion today. Thankfully no side effects yay! I have been trying to find information on my index and I was nervous because I thought my score seemed high and I could find no information! I'm 3.52. You've definitely eased my anxiety.

3.52 is considered a high index number, but since this was your first infusion, your risk factor for developing PML falls at 1 in 1,000. After 24 infusions, your risk factor will jump to 1 out of 123. After 49 infusions, a titer number of 1.9 has a risk factor of 1 in 118, which would explain golfore's neuro's reasoning. Here's a chart for you:
http://www.slideshare.net/gavingiova...hare_slideshow

I also believe quality of life is important, but chances are, doctors are going to pull the plug once they believe the benefits no longer outweigh the risks. Unfortunately for us, that's the way they'll view it, QOL or not. The last thing any of them want is a patient who died under their care because they still prescribed Ty, knowing his/ her risk factors.

Best of luck to you on Tysabri.

[Myoak]

To a large extent I agree with what you are saying Kimba but it would be a mistake to believe all doctors follow the reasoning you laid out for stopping Tysabri.

I personally know several patients who have higher than 1.5 JCV titers and continue on Tysabri today after many, many years of treatment on it.

Anyone who wants to continue on Tysabri but the neuro has a contrary view should look for a new neuro who will help them continue. They are out there. You just have to make calls to see if you can find one close enough to do you any good; proximity may be the biggest problem.

Individual patients will have to be convincing that they realize, accept the risks, and are capable of making an informed decision to continue, imo.

I personally know 3 patients who stopped Tysabri after years of successful treatment because of risk factors but are now back on it. Their condition deteriorated so much post-Tysabri it became a much larger problem than Tysabri risk. A 1 in 118 risk of PML became acceptable if they could enjoy better health by taking Tysabri.

I can understand how those who become much worse post-Tysabri might judge risk as follows… “100% certain I became much worse off Tysabri, less than 1% risk I will get PML, I’d rather live with that risk than live with the severity of MS I have, after all there are 117 chances out of 118 I won’t get PML.” I make no judgment for or against what they did; only saying I understand.

I agree with you Kimba, most doctors reason as you presented but there are a few who allow patients to decide if they believe the patient is capable.

Studies have shown that doctors are more cautious about risk than patients. But I have to wonder if only doctors with MS were surveyed they might be willing to take a little more risk?

I should remind you golfore, that the stats on PML are definitely not useless, they are facts. Any patient not considering those facts and giving them weight in making a treatment decision may not be judicious enough to make a rational treatment decision in the opinion of many neuros, I believe. Mathematical averages are a huge component of treatment decisions. Good judgment considers them.

I hope I don’t come off as mean-spirited. It is a serious issue and one each individual will handle uniquely. There are neuros who allow patients to continue on Tysabri. Whether there is one in a particular area is a matter of searching. Best

[KatieAgain]

My MS Specialist and I have actually had the discussion about our "risk" tolerance. And thankfully, we BOTH have a high risk tolerance. We boarded the Tysabri Train together and we will jump off together when we mutually agree on such a time.

I think a good point has been woven into this thread. MSers all have different risk tolerances. Neuros all have different risk tolerances. Have a frank discussion with your Neuro before he/she pulls you off the Train a few stops short of your intended destination. Oh Sucko!

[golfore]

Myoak,

I said statistics are "mostly useless". I am just one person. How many people contract PML after 80 infusions? There aren't enough stats to make them very accurate. There are people who take Ty every 6 weeks, or every 8 weeks. There have been people who took several immunosuppressive drugs.

I am not being reckless. Quality of life is very important to me. My neuro/MS specialist mis diagnosed me and I have more disability than I ever thought. Every one needs to make their own decisions, with help from the Doctors.

[LL60]

I hope that this thread continues with people sharing how they deal with high index numbers at this time. We all have to make our own decisions, but for some of us this is our only "sounding board" to share with others going though the same things we are.

I just got my test results yesterday. I am now at 4.02. I get tested every 3 months or so. I was 4.1, then 3.66. This test measures the level of the JV virus in your system. Obviously, I live with a high level of the virus. I have been on Tysabri almost 5 years (in June)

If my levels jump, I will take that as assuming that if there is more virus in my blood, there is more virus in my brain, and my risk for pml just shot up, and I will seriously consider going off of it.

Or until I can find more information on just what all these numbers mean.

I am not a gambler and I just in no way want to take the gamble that my ms will return to the levels it was before Tysabri. Life was not good. My life at this moment is excellent. I enjoy each and every day. I am very reluctant to give that up.

thanks for "listening."