Wife Maybe headed for TY

[Hank93]

My wife is currently on Aubigo and after seeing a new Neuro he is talking about possibly changing to TY. I have been doing some reading here on it and have a couple questions.

What is PML? What is JCV?

Thanks,

[misslux]

PML is pretty serious and those that are JCV positive and get Tysabri are at risk.

http://en.wikipedia.org/wiki/Progres...encephalopathy

http://en.wikipedia.org/wiki/JC_virus

[22cyclist]

The John Cunningham virus, known more commonly as the JC virus, is a very common virus in the United States. It’s estimated that more than three-quarters of Americans have it. The average person carrying the JC virus will never know and is unlikely to suffer any side effects as a result of its being in his or her body.

However, for a small percentage of individuals with multiple sclerosis (MS), that is not the case. The JC virus can be activated when a person’s immune system is compromised because of disease or immunosuppressive medication (Tysabri for example.) The virus can then be carried into the brain, where it infects the white matter of the brain and attacks the cells responsible for making myelin, the protective coating that covers and protects nerve cells. This infection is called progressive multifocal leukoencephalopathy (PML).

(1) PML can be disabling, even fatal.

You must have the JC Virus in order to get PML. Some people have it and some don't. While having the JC Virus increases your risk of PML, it doesn't mean you will develop PML.

What's your individual risk of PML?

Although it's impossible to predict if you'll get PML, research findings can help us provide an estimation of your risk based on the following known risk factors: the presence of the virus that causes PML (the JC Virus) and this can be managed somewhat by knowing your JCV index number, a blood test done at intervals (it helps with knowing your risk factor), the number of TYSABRI infusions (especially greater than 24), and the use of medications, now or in the past, that can weaken the immune system. There may also be other risk factors for getting PML during TYSABRI treatment that we do not know about yet.

What are the signs and symptoms of PML?

While there is currently no known treatment, prevention or cure for PML, you'll need to know how to recognize the signs and symptoms. That way, should you get PML, you may be able to detect it and seek medical attention as early as possible. The symptoms may be very similar to MS relapses. However, PML symptoms do not go away, even with steroid treatment.

Examples of PML symptoms:
1.Abrupt or significant personality changes
These are often noticed by a family member or caregiver.
2.Recent or sudden change in cognitive behavior
Examples include difficulty typing on a keyboard or remembering what time of day it is.
3.Unusual difficulty with speech
Examples include slurred speech, mumbling, speaking in a whisper, or speaking in long, meaningless sentences.
4. Other physical changes
Examples include eyesight, balance, strength, or other problems that have lasted several days.

Tysabri infusion centers use the TOUCH program which keeps up with these symptoms by asking the patient a series of questions before each infusion to try and catch any abnormalities before they get another infusion. They will alert the Neurologist right away. However it is important that you and the patient do the same.

References: http://www.tysabri.com/pml-risk.xml
http://www.healthline.com/health/mul...or-ms-patients

From a personal standpoint, I would tell you if she is JCV negative, Tysabri is a great drug. I am negative and it has changed my life. It is the most effective drug out there right now for MS. Its just up to your wife's risk/reward tolerance.

It is monitored well though, better than the first time it was out.

Best of luck with your decision.
Let us know how it goes, OK?
Lisa
Moderation Team

[carol4]

I was on tysabri for a little over a year with great MRI results! It was monitored well, tested for jvc regularly, had at least an hour review appt before they'd even administer including blood work. The whole thing took hours so wanted to try the new oral meds for convenience. Aubgio gave my severe stomac problems, did a flush to get it out of my system and have been taking Gilenya. I missed 3 Dayan of work last week, have weakness on left side, extreme fatigue all the time, and of course balance issues. Some times convenience comes at a high price! I'll be lookimg at going back to the tysabri!