JVC+ : should I still give Ty a shot?

[Franzi]

Hi
I was referred to a MS specialist who recommended Ty (currently on Cop).
Well, turns out I am JVC+. What now?
Still Ty or Gilenya/Tec.?
My neuro told me I have a 1 in 700 PML risk..?
I feel all left alone with such a huge decision and could use some input and reassurance
Are Gil and Tec as effective or is one better?
With Gil being an immunsupressant, I am concerned that Ty won't be an option anymore. ..
Thanks!

[LL60]

Hi Franzi,

Welcome to msworld. All we can do here is share our own experience. MS is just one of those things that when they say it is different for everyone - they mean it. It can be hugely different for everyone and from year to year and even from day to day.

I am on Tysabri. 52 infusions. I found out in Sept. that I was JCV +. I found out last week that my index number is 4.1. I will continue on Tysabri.

I was on Copaxone for 5 years. It did not help much and I ended up having a reaction to it that was very serious and could not take any injectable meds after that.

Tyasbri has been like a miracle drug for me. No side effects - well some headache problems the first few months - and it has stopped ms dead in its tracks and reversed some symptoms.

My advice to you is read, read READ. Get the facts. Not sure where your doctor got the 1 in 700 number. I would ask. Read up on all the meds and write down your questions asking the most important to you first in case you have a time limit on your office visit. Email your questions to your doctor if possible. Keep reading.

All the meds can have side effects. Some of them pretty bad. Some have risks. It depends on you and your ms and maybe your family and friends and where you are in life. Just read. Gather as much information as you can. About ms, about medications and treatments and tests available to you. The most current you can find. Information is changing fast and things they know about ms are changing fast.

The doctors can guide us, but the final decision has to be ours. They are the experts on the body, but we are the experts on OUR body. Or we should be anyway. Become your expert.

Let us know how it goes. It's hard. It can be really hard. But please don't just hand your fate over to your doctor. Be informed. Ask questions. Here. At the doctor's office. And keep looking until you find your answers.

[MSW1963]

My thoughts for the most part echo those of LL60.

I was dx'd much later than you, although I had sx's since my teens, with great recovery until my late 30's early 40's, eventually dx'd with MS, disability coincided with my dx.

The later dx alone probably poses huge differences, your early dx and treatment versus my later dx, untreated until
40ys of age.

I was on two prior DMTs, copaxone and rebif. Copaxone for 2yrs, did nothing for me other than intollerence and side effects. I experienced an 'adverse event' and was take off of Cop.

I half hardly started rebif about a year later. The side effects and intolerence were a repeate of those I expreienced on Copaxone. I was on rebif for about 6 uncommitted months.

I took a 3yr break from DMTs, before starting Ty. It has been my miracle MS drug in the +2yrs I've been on Ty.

In the 12yrs since my dx and starting DMTs, my MRIs showed no changes. None, zip, nada. My MRIs were stable, no new lesions, no changes, but I have experienced lots of slow progression during the 'stable MRIs' period of time.

After a year on Ty, I decided to stop the infusions. I experienced the 'rebound' effect now associated with stopping Ty. It resulted in significient decline, difficulty standing and walking that I'm still recovering from even now, a year later. The only changes to MRIs in 12yrs occured after stopping Ty.

Be aware of risk in addition to CJ virus. What will you do when faced with the choice of potential increasing CJ risk and the risk of serious decline if you stop taking Ty.

Improvements since I've been on Ty have been life changing. MS related insomnia for +10yrs resolved in the first 3months, and bowel incontenience for the same period of time, also resolved within the first 3 months.

I've had some very mild improvement in MS fatigue, nothing close to normal energy/endurence, but I don't have fatigue to the dibilating/bed bound extent I once had.

I was aware of the JC risk, but after 10yr with MS and unsuccessful treatments, I couldn't imagine another 10yrs like the previous 10. I took the risk and I've had improvement that execeeded my expectations. I'm at high risk catagory for JC virus according to my doc and the published stats.

My MS doc is encouraging me to change meds, but I'm not convenienced that I won't lose the ground I've gained with Ty, plus the possibility I'll experience side effects and intollerence, particularly given my history with 'intestinal problems', that's associated with the new med he's recommending.

There's so much more that's now know about risks associated with Ty than was known when I started. I'm not sure any of it would have changed my decision.

Sorry this is so long, but I hope it helps.

[Kimba22]

Hi Franzi,

Welcome & I hope you are finding MSWorld a good resource for information. Did your MS Specialist explain how he came up with your PML risk? The new JCV index tests the JCV titers (or amount of the virus) in your blood, which gives drs. a better educated risk profile for PML if you are JCV+. Here's a thread discussing it http://www.msworld.org/forum/showthread.php?t=127219

When I went on Tysabri, my MS Specialist wasn't concerned that I had been on Gilenya. What he was concerned about was whether or not I was JCV+ (I'm JCV-). Even before we knew the results, he kept reiterating that my risk for developing PML was low during the first 2 years. I have also been on Cytoxan, a chemo drug sometimes used for MS.

I wholeheartedly agree with LL60. Learn as much as you can. Write down questions and ask your doctor. In the end, it's your body and you are the one who must feel comfortable & will live with with all the decisions made. Each one of us is unique and will have different experiences in their MS journey and the medications used.

I've had both listed and not listed side effects. While I was on Rebif, I was the only case my MS Specialist, the drug company, and the FDA had knowledge of who developed my serious reaction. I have some unique circumstances that led to this, but am the only one who got a heart infection while on Gilenya after it caused a significant drop in my wbc count.

I know this decision must seem overwhelming for you. Your MS Specialist is looking at your history and recommending the most effective drug in his/her current arsenal. That doesn't mean Gilenya or Tecfidera wouldn't be effective for you, but they have potential side effects as well. Because you are JCV+, your neuro probably wants to keep these drugs in his/her arsenal for when you stop Ty.

Good luck in making a decision! Wishing you the best,

[alanpgh]

This link from a recent MS Conference includes a brief video explaining the new JCV index test:
http://www.msworld.org/forum/showthread.php?t=128171

This provides a helpful explanation that might be helpful in your discussion with your Doctor.

Good Luck,
Alan

[timeuponaonce]

LL60,

I saw your post above and thought I'd share my experience here:

I've been taking Tysabri for over 4 years. My MRI's are stable, no changes for over 3 years. And, I don't get any side effects from Tysabri.

After seeing the video from the CMSC MS Conference in the Express, I asked my Neuro for the JCV index test.

My results were a bit alarming... at above 3.

My Neuro treats over 1200 MS patients, so he is very experienced. He asked me to have a Lumbar Puncture (LP), which I did. Never had one before, and I was concerned about headaches following the test. He used a special narrow needle for the LP. We are all different, but for me no headache or side effects.

The results of the LP indicated no PML; normal white blood cell count, etc. Based on these results, my Neuro suggested I say on Tysabri. I am following his suggestion. He will likely monitor me even more closely in the future.

This is a personal decision for each of us, and we are all different. I hope sharing my experience is helpful to you and others.

Best Wishes!
Time