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  #1  
Old 06-14-2013, 01:45 PM
MSW1963 MSW1963 is online now
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JCV Antibody Titer Number

My JCV titer is 1.81.

For anyone who wants to report their titer number.

"Antibody titer is a laboratory test that measures the presence and amount of antibodies in blood. The antibody level in the blood is a reflection of past exposure. Pronounced: tie-ter"

Based on some recent searches, info from my MS doc, reading I've done here, the results for the new test can be of concern if/when there is a sudden spike in level of PML antibodies, or a steady increase over time, approaching a number that indicates the highest presence/risk for full blown PML.

I don't know what the antibody magic number is for withdrawing a patient from Ty treatment, although I think my doc mentioned it to me. My doc mentioned .9, think that's considered low risk.

I don't know what my PML status was when I started Ty, but I'm curious, and will ask. I do remember after several months of Ty infusions, during a regular neuro visit, the Neuro PA mentioned that I was PML+. It's the only time I recall anyone reporting on my status until I had the titer blood work done in mid/late May.

I lived in europe just prior to the Mad Cow disease epidemic, making diatiry exposure plausiable in my case.

Last edited by Seasha; 07-24-2013 at 02:04 PM.. Reason: OP's request
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  #2  
Old 06-14-2013, 03:49 PM
MSer102 MSer102 is offline
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Just for clarification for everybody I think what you meant to say is [U]JC virus[/U] antibodies and [U]JC virus[/U] status, not PML antibodies and PML status. I think you meant to say that you are JCV+ instead of PML+. If you are PML+ that would mean that you have PML. I hope that even though you are JCV+ you are PML-!
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  #3  
Old 07-22-2013, 05:59 PM
moolk moolk is offline
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I find out my titer number on Thursday. I will be sure to share!
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  #4  
Old 07-23-2013, 10:42 AM
LL60 LL60 is online now
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I have shared my number on other threads.

4.1 as of last month. When I was first tested in Sept. the test was not available, so I have nothing to compare it to. I will be retested in 6 months and then can see if there is any change.

As more and more are tested then they will be able to tell more so just what it means. I sure the number game will be redone over and over.

When I started Tysabri over 4 years ago, they told me my risk of PML was 1 in a 1,000. It is now 1 in 118. But, the longer I am on Tysabri, the less willing I am to give it up.
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  #5  
Old 07-23-2013, 03:10 PM
LL60 LL60 is online now
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I'd also like to throw out this question: Why do you think the numbers for deaths from PML still stay the same? 23% of those with Tysabri related PML die. 4 more died last month. There have been 377 cases.

Anyone have any information on this? Why they can't seem to bring the death rate down?

Read where low weight may be a cause for more cases in Europe. And have read where they have been no deaths from PML where it has been caught before symptoms have started due to frequent MRI's. But that is as close as I have come. Nothing on anything being done to cut the death rate. I'm sure they are working on it. Just can't find the research.
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  #6  
Old 07-23-2013, 03:45 PM
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regi girl regi girl is offline
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Titier #

MY NUMBER IS 3.93.

I JUST FOUND OUT LAST THURSDAY. VERY DISAPPOINTED WITH THIS NUMBER.

I DON'T REMEMBER WHERE I SAW IT BUT I FOUND INFORMATION THAT SAYS THAT 4.9 IS AS HIGH AS THE TEST MEASURES. NOT SURE WHAT THAT MEANS OR IF I'M EVEN CORRECT.

CAN ANYONE ELSE VARIFY THIS? I WILL TRY TO FIND WHERE I FOUND THIS WHEN I RESEARCHED THE TITIER INDEX NUMBERS AND WHAT THEY MEAN.

I'VE ONLY BEEN ON TY FOR 13 INFUSIONS I GET #14 NEXT WEEK. I'M STILL IN THE SAVE ZONE FOR NOW BUT AFTER MY 18TH INFUSION MY ODDS ARE 1 OUT OF 123 FROM WHAT I UNDERSTAND.

I DON'T THINK I'M GOING TO BE COMFORTABLE WITH THESE ODDS.

MY DR WANTS ME TO START ON LEMTRADA WHEN IT IS APPROVED, BEEN STUDYING UP ON IT AND I THINK I MIGHT GO THAT ROUTE BUT I HAVE NOT COMPLETELY MADE MY MIND UP.
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  #7  
Old 07-23-2013, 11:12 PM
LL60 LL60 is online now
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Just to help keep numbers in perspective:
1 in 5 will develops heart disease
1 in 7 will develops cancer
1 in 24 will have a stroke
1 in 38 will develops a hospital acquired infection

This information is from the Rocky Mountain MS Center and a paper they did on evaluating risk with ms therapies.
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  #8  
Old 07-24-2013, 07:28 AM
Myoak Myoak is online now
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Here is a link which will help find some of the info you seek, Regi.

https://cmscactrims.confex.com/cmsca...Paper1642.html

When it comes up click on the box which says [pdf].

The chart you are looking for is in the middle of the page. You can enlarge it so it is readable. As you will be able to see there is no one having an index number over 5.
The JCV index number is very new so we don’t know everything about its best use. It is one important factor to use in treatment decisions but not the only one.

Also, I haven’t come across anything which “dramatically” elevates your risk at 18 months, Regi. The risk categories are listed as 0-24 months, 25-48 months, and 49-72 months. However, there is an elevation of risk between 18-24 months of .49 per 1,000, according to the latest data I have seen. Whether that is dramatic is subjective. It will be to some , not to others.

From what you indicate your doctor may view 18 months as max for you and Tysabri. That will be up to you two. No one can predict when the FDA will approve Lemtrada, it could be this fall but it could be first of next year. Be careful of painting yourself into a corner by agreeing to stop Tysabri if the treatment you are going on is 3 months away.

There will be a study published later this year which indicates the less time between stopping Tysabri and starting a new treatment the better; less opportunity for MS to rebound in the interim. Shorter washout period provides less time for MS rebound is the general idea. MS rebound is a huge problem with discontinuing Tysabri so any technique to handle it is very important. Sorry I cannot give you the source Regi, the study isn't published, yet. To everyone else I'm only presenting speculation, for what its worth.

One other thing. Since Tysabri was formerly given only once a month (every 4 weeks) the number of months and the number of infusions have always been interchangeable. But with dose extension that should change. Be sure to ask your doctor if he is concerned with the number of months or the number of infusions. Someone dosing every 8 weeks gets 12 doses in 24 months, not 24. So they might be in a lower risk category for twice as long if the number of doses is the concern, rather than # of months. Just another note to discuss with your doctor. You probably have a bunch!
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  #9  
Old 07-24-2013, 09:57 AM
LL60 LL60 is online now
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myoak,
thank you for putting the web site in again. I went to it the first time, but more as an information tool to ask my doctor for the index test. I didn't have a number yet to work with. Now that I have a number I can read all the charts with a different eye.

Yes, it is true that there were more PML cases as the index number rose. BUT look at all those who had higher numbers and yet have not developed PML. They, at this time with this chart, are only looking at a little over 50 cases. There have been 377 cases of Tysabri PML.

I hope that more people ask for this test and we can get a clearer picture of just what these numbers all mean.

Sorry for posting so much lately. I just have been trying to stay on top of things and you guys are the best at helping to keep me informed.

I am not a gambler. Not at all. I am well aware of what PML can do to your body. I also know what ms was like before Tysabri. And in no way shape or form do I want to go back to that.

As more information comes in, I will keep revaluating. But I just am not seeing anything that as of yet will make me give it up.
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  #10  
Old 07-24-2013, 04:04 PM
Myoak Myoak is online now
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You make a lot of good points, LL60.

Yes, that PML data is from only 51 people. For now, that is what has been presented and it is what we have to use, however limited it may be; and it is limited data.

Yes, of the 2242 MSers who did not have PML and were tested for JCV index at least half of those 2242 are in the range between 2.0 and 3.5, as it appears on that middle chart. So a high JCV index # is no guarantee of PML at all, according to the chart.

There are a number of factors to consider in making treatment decisions. JCV index is an important one; but not the only one. It’s great to get people thinking clearly about it so they can make decisions best suited for themselves.
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  #11  
Old 07-24-2013, 06:07 PM
MSW1963 MSW1963 is online now
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Myoak, can't thank you enough for your perspective and research you've posted here for all of us to share.

It's really contributed greately to the confidence I have about my decision regarding Ty, at least for the time being.



And thanks again Seasha! We did it with no PVCs in the title!.
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  #12  
Old 07-25-2013, 09:34 AM
Myoak Myoak is online now
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I appreciate your kind words MSW. We are all learning together... MSers, doctors, and caregivers. Each MSer is unique. Some develop neutralizing antibodies to one med but for other MSers, the med works great. Nothing works well for everyone but it seems everyone can find something which works, perhaps to varying degrees.

Everything in MS is so individual. Individual response determines the value of a medicine. So the concept of a medicine being right or wrong for any one person is individual.

The concept of risk varies a tremendously between individuals. Some MSers have a huge concern of PML but a much reduced concern of MS, it seems. LL60 states, 1 in 5 will develop heart disease, 1 in 7 will develop cancer. So PML at 1 in 118 seems tolerable to her because the med with that risk is also providing a current state of good health and “normal living”.

I understand LL60's perspective. But I also understand those who cannot tolerate that degree of risk, too. There is no right or wrong about it, IMO, each person has their own perspective. That is perfectly ok, actually quite normal and to be expected.

It is interesting to see people post their JCV index and express their perspective about it. We learn from each other when people talk about what they are facing, what doctors are saying, what research is illuminating. Different viewpoints are great because they may inform us and help with personal treatment decisions so torturously difficult in MS.

There are lots of really good people to learn from here.
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  #13  
Old 07-25-2013, 08:08 PM
moolk moolk is offline
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Quote:
Originally Posted by regi girl View Post
MY NUMBER IS 3.93.

I JUST FOUND OUT LAST THURSDAY. VERY DISAPPOINTED WITH THIS NUMBER.

I DON'T REMEMBER WHERE I SAW IT BUT I FOUND INFORMATION THAT SAYS THAT 4.9 IS AS HIGH AS THE TEST MEASURES. NOT SURE WHAT THAT MEANS OR IF I'M EVEN CORRECT.

CAN ANYONE ELSE VARIFY THIS? I WILL TRY TO FIND WHERE I FOUND THIS WHEN I RESEARCHED THE TITIER INDEX NUMBERS AND WHAT THEY MEAN.

I'VE ONLY BEEN ON TY FOR 13 INFUSIONS I GET #14 NEXT WEEK. I'M STILL IN THE SAVE ZONE FOR NOW BUT AFTER MY 18TH INFUSION MY ODDS ARE 1 OUT OF 123 FROM WHAT I UNDERSTAND.

I DON'T THINK I'M GOING TO BE COMFORTABLE WITH THESE ODDS.

MY DR WANTS ME TO START ON LEMTRADA WHEN IT IS APPROVED, BEEN STUDYING UP ON IT AND I THINK I MIGHT GO THAT ROUTE BUT I HAVE NOT COMPLETELY MADE MY MIND UP.
My neuro just told me today that so far Lemtrada (sp) might not be a possibility for those already on Tysabri. They are both strong drugs and the washout period for Tysabri is 6 months. Anyone else getting feed back on this subject? Makes me feel that there might not be much for those of us on Tysabri and have been on it so long that that the odds are getting scary.
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  #14  
Old 07-26-2013, 09:18 AM
Myoak Myoak is online now
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Washout period is done on a case-by-case basis according to Biogen.

Read Biogen’s info on Tysabri washout by Googling or going to:TYSABRI Product Information - Biogen Idec Australia
Click on “Revised-PI-TY…pdf” and “open file”.

Quote from page 8
“Stopping TYSABRI Therapy – Prolonged Pharmacodynamic Effects

"If a decision is made to stop treatment with TYSABRI, the physician needs to be aware that natalizumab remains in the blood, and may have pharmacodynamic effects (e.g. increased lymphocyte counts) for approximately 12 weeks following the last dose. Starting other therapies during this interval may result in a concomitant exposure to TYSABRI. For drugs such as interferon and glatiramer acetate, concomitant exposure of this duration was not associated with safety risks in clinical trials.

No data are available in MS patients regarding concomitant exposure with immunosuppressant medication. Use of these medicines soon after the discontinuation of TYSABRI may lead to an additive immunosuppressive effect. This should be carefully considered on a case-by-case basis, and a wash-out period of TYSABRI might be appropriate.”

Nothing is set in stone on duration of wash-out period for Tysabri. Each neuro has preferences. I’m sure they are willing to discuss the topic..

As far as not being able to go off Tysabri and onto Lemtrada? That also may be an individual neuro preference. This is the first and only time I ever heard of not being able to make that switch. Nor have I ever read of it. Most likely that is considered on a case-by-case basis, also.

All of the FDA approved MS meds are available for those coming off Tysabri. The wash-out period is up to doctor and patient. Individual doctors will have individual views on appropriate duration.

If you are doing well on Tysabri or by any other means, congratulations! Let’s enjoy life. Maybe the future is going to be worse; perhaps it will be better, who knows? One thing for sure is I’m terrible at predicting the future.
So I want to enjoy present life, the people I love, and the delight of new friendships.

We, MSers and caregivers, of all people have learned to appreciate how wonderful life is, how precious and valuable. The small kindnesses, the smiles, the encouragement to others are what we love to give and what we hope to receive, also.

Researchers work tirelessly on this disease, we will see good things, I’m sure.
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  #15  
Old 07-30-2013, 08:21 AM
moolk moolk is offline
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titer number...been waiting for this

So bummed...I've been waiting to know my titer number and the lab did the wrong test. Test results came back for testing if I was JCV+ or not. I already had this test and know that I am JCV+ according to the lab, they don't test for titer numbers. Are there only certain labs that do?
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