Serous Questions about this medication

[Chrisjarvis93]

Hey everyone, first about me, I am 21, a new father (I was diagnosed when she was about 3 months now she is almost 6 months) I have aggressive MS. I quickly went from loss of balance, to using a cane, and now using crutches. My nero wants me on this medication. I TOOK MY JV VIRUS TEST TODAY ! but will meet with my nero one more time after it comes back plus another round of MRI'S.

My questions are

From my understand, you must have the JV virus to get PML, correct?

If I test positive, is it still safe (PML RISK)?

How often do I get tested while on the medication for the virus?

If i test positive while on it, is it safe to stop COLD TURKEY?

Is pml detectable and at better chances to stop it before it gets worse ?

THANK YOU EVERYONE !

[Yezok]

there are question best left to you neurologist, but please read about Tysabri and the cases of PML associated with it.
I know first hand how overwhelming and helpless one can feel when first diagnosed and how hard it is for others to understand what you are going through because they see you as they always have no broken bones or blood gushing out of you and they can't understand what you are going through.
The best advise I can give you is to take an active role in your treatment read as much as you can and don't be afraid to ask your neurologist questions then make an informed decision as to treatment. their are many new drugs out there from when I was first diagnosed but I have not had to change my medication because it is working for me and i tolerate it well.
there is no miracle cure or at least i have not found one.

[Chrisjarvis93]

I have read about it alot, and I don't look at it that way bc im 21 but feel 100 and can barely walk so its easy to see that theres something wrong with me. These questions are wanting to reach out to other people that have done this medicine and to see how much you get tested and what they have been told about pml, I don't see my nero until I complete some MRI's

[Myoak]

Hi Chris,

1. Yes, JC virus causes PML. You must have JCV to get PML

2. If you test positive the results will show an index number which helps define your PML risk. Search other threads related to JCV for a better understanding of safety with various index numbers. JCV is not the only risk factor, number of Tysabri infusions and prior immunosuppressant use are the other two.

3. How often you get tested for JCV depends on your neuro; 6 months is most common but can be more often.

4. If you test positive while on Tysabri you can stop taking it if you choose. There are no addiction/dependency issues. But for some people MS rebound is a huge problem when they stop Tysabri.

The disease which has been kept in check by Tysabri seems to flood back when Tysabri is no longer keeping it at bay. Not always, but too often. Under General Questions and Answers the thread “Denial” by Saramascara contains my post which you may want to check out.

5. PML is detectable by MRI before clinical manifestation. And, yes, those who recover best are those detected earliest. MRI is becoming more frequent for those at higher risk. Gadolinium enhancement is not required to identify PML so no dye injection is required making the MRI a bit more brief.

I want to add that extending time between doses of Tysabri seems to be effective in reducing PML risk. Over 50% of the population has JC virus. It only becomes a problem when the immune system is suppressed, as Tysabri does, resulting in less than adequate immune surveillance against JCV.

For years Tysabri was infused every 4 weeks. Recently, some neuros have been going 5, 6, 7, or 8 weeks between infusions. The idea (hypothesis) is that extending dose allows Tysabri to wear off in the latter weeks affording more immune surveillance protective against JCV.

A presentation earlier this month at the MS conference in Boston showed 684 MSers enrolled in extended dosing with 0 cases of PML and 674 MSers on standard dosing (every 4 weeks) having 2 cases of PML.

Those 684 with 0 cases of PML represented 861 patient years, however, the researchers said that 1248 patient years are required to achieve statistical significance. So we are over 2/3 of the way to proving dose extension reduces PML risk. But 2/3 isn’t all the way so we have to wait to be definitive. So far, so good.

Chris, your neuro may want to get the aggressive MS under control by infusion every 4 weeks then switch to a longer time between infusions, if dose extension plays out as it appears right now.

Bests wishes on the DMT you and your doctor ultimately choose.

[Kimba22]

Hi Chrisjarvis93,

Welcome to MSWorld. I'm sorry about your diagnosis. I hope you find this site to be a great source for information and support.

Congrats on being a new dad! I am probably biased, but agree with your neurologist about going on Tysabri. It has the greatest efficacy of all the DMT's. Many people stabilize on that drug (me included), while some even improve! That's my hope for you so you can enjoy life with your precious daughter.

Myoak provided you with some excellent answers. I believe his wife has been on the drug for quite some time. I'll have my 2 year anniversay soon. It's the only drug I can say has done much to slow my progression, after being on five other DMT's plus another drug. (When the drug was finally suggested for me, I just did not feel comfortable going on it because I could not have MRI's. At the time I had a pacemaker that was not MRI compatible {but finally had surgery to get one that was} and would have needed spinal taps a minimum of every 6 months. The blood test checking for the JC virus was also not available then.)

I will add just a little bit of information to Myoak's to help you make the most informed decision you can.

My questions are

From my understand, you must have the JV virus to get PML, correct?

Even if you initially test negative for JC virus, the test is still not 100% foolproof. There is also a slight risk (I think around 3%) you could eventually covert to positive if you are negative. So you'll continue to be tested while taking Tysabri.

If I test positive, is it still safe (PML RISK)?

Even if you test positive, the chances of developing PML during the first 24 months are extremely low. As Myoak already mentioned, there is an additional test that's now available to see how high your risk is if you are JCV+. It checks the level of antibodies ( titers) you have. The higher the number, the greater the risk.

Here's a chart that will help you understand PML risks: http://www.slideshare.net/mobile/gav...hare_slideshow

How often do I get tested while on the medication for the virus?

I think this depends if you test positive or negative. I'm tested every 6 months, but I'm JCV negative. If positive, you'll probably be tested more often.

If i test positive while on it, is it safe to stop COLD TURKEY?

Like Myoak said, you can stop at any time. But, make certain your doctor has an exit strategy in place for you after you stop. The "rebound effect" does not happen to everyone, but you should be proactive. My doctor will give a dose of IV steroids (aka pulse steroids) for a couple of months after the final infusion, and will start patients on another Disease Modifying Therapy (DMT) as soon as he feels it's safe. Presently he leans towards recommending Gilenya
(Fingolimod) around the 8 week mark.
http://www.msdiscovery.org/news/news...milar-efficacy.
http://multiple-sclerosis-research.b...1_archive.html

Is pml detectable and at better chances to stop it before it gets worse ?

Any sudden change with new and/ or worsening symptoms warrants a call to your neurologist. You might be having a relapse (if symptoms last more than 24 hours and at least 30 days from a former one) or it might be PML. It's really important to report changes to your neurologist. Every time you go for an infusion you will be asked that same question. If so, the infusion will be held off until your neurologist clears you.

Like Myoak stated, a MRI is used to detect PML. A spinal tap is done to confirm the diagnosis.

Then, if PML is confirmed, a process called plasmapheris is begun to get Tysabri out of your system quickly. You can read more here: http://m.ccjm.org/content/78/Suppl_2/S33.full

I know it sounds scary, but so is aggressive MS. Other medications are out there, but this is probably the best choice for you right now. Hopefully you'll have positive results from it if you decide to go this route. It can be overwhelming trying to make a decision (probably is for most people), but especially when this is all so very new to you. I hope the info both Myoak and I provided will help you make a decision you are most comfortable with.

Best of luck

[lindaincolorado]

Hi Chris, congrats on fatherhood

Myoak and Kimba answered your questions and gave you great information. I still wanted to put my 2 cents worth in.

I so believe we have to be our own advocates and acquire all the knowledge we can and yes, you are working on doing this!

I have been on Tysabri for 8 blessed years It halted my progression-if I could've started it 2 years earlier, I believe, my R leg would not be an issue as it now is. I switched from 2 neuros who would've taken me off Ty-one ego driven and the other CYA. One was at 7 months of me being on Ty and other at 3 years.

I switched from jcv- to jcv indeterminate (which some professionals are calling positive ) <.2 is neg and >.4 pos I have been .28, .23 and .27 in that order for approx9 months. I know someone on this site who has been 4.1 and she has not given up her Tysabri.

By the way, I have decided to go every 6 weeks. I had my first MRI Tues after 4 mths of this schedule change and am hoping/praying for the same great MRIs I've had since starting Ty !! I think next month will be my 98th infusion

Good luck and my best wishes

[regigirl]

Hello Chris, what a mix of emotions! The happiness of being a new dad and the stress of dealing with this disease, you are so young to be going through soo much. Welcome and we are pulling for you, there isn't a better group of people to help then here.

I have just had my 22nd. infusion and I will share my experience with Ty and the reasons I take TY. This is a decision only you can make, you have to research, research, research and make the best educated decision that is right for you in your MS treatment.

I found out I was JCV+ not long after I started TY, not only am I JCV+, my titer number is very high 3.67, second test 3.34. When they told me 3.67, I was so scared but when I researched the TY rebound effect I was scared to death of that also. When I started Ty my doctor was not aware of the rebound effect. I was very upset and I didn't know what to do, other DMD's made me worse so I didn't see other meds as an option. My children wanted me to get off of it ASAP! That was about a year ago.

I listened to my children and understood why they wanted me to quit but this is the decision I made for ME.

Ty has helped me soooo much, my quality of life is so improved. I decided I didn't want to go back to the way I was and I decided (with discussions with my neuro, who I love) that I was going for it. No way was I going to go backwards with this disease, but I was also 50 years old, you are just 21.

My first infusions were 4 weeks then we went to 8 weeks, by the second 8 weeks I had an exacerbation, we changed to 6 weeks, much better.

I continue to do pretty well, like everyone I still have days where I don't feel like getting out of bed, but it's nothing like it was before TY.

Once I made the decision I have never revisited it, I agonized over it for about a month but once I decided to accept the risk, that was it, I've never looked back. I think I made the right decision for me.

My nuero and I have made the decision that I will do Lemtrada when it is FDA approved, he was one of the doctors who participated in the study. Suppose to approved in the U.S. at the end of November, I hope.

I am not posting this to influence you to go on TY but to let you know that even us "old" people have a difficult time in deciding what to do. We all have to do what we feel is right for us and not what our family or others think, no matter how well meaning. My children and sisters have respected my decision.

I know this doesn't address the facts but everyone has given you great info about the facts, I can't add more to what has already been mentioned. I just want you to know that even us old people get scared too, it's very normal. I'm so glad that you are reaching out for more information and I hope others will share their experience about their decision to start, stop or continue on Ty.

I wish you the very best. Good luck!!!