What exactly happens to you if you get PML?

[ms man]

[rdmc]

Here's a good synopsis including symptoms.

http://ms.about.com/od/treatments/a/...-Diagnosed.htm

Another article with MRIs of Tysabri associated PML patients...in the early days of Tysabri patients being diagnosed with PML, it usually meant death or severe disability, but in recent years they've gotten better at early detection and treatment of PML in the Tysabri patients, so I believe there are now stores of recovery from PML.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3259335/

[22cyclist]

In PML the disease is very much like MS, only it progresses much faster, and is usually fatal. PML is a demyelinating disease, in which the myelin sheath covering the axons of nerve cells is gradually destroyed, impairing the transmission of nerve impulses. It affects the subcortical white matter, particularly that of the parietal and occipital lobes. PML destroys oligodendrocytes and produces intranuclear inclusions.

Symptoms include weakness or paralysis, vision loss, impaired speech, and cognitive deterioration. In addition, the lesions affecting the parietal and occipital lobes can lead to a phenomenon known as alien hand syndrome.

PML is diagnosed by testing for JC virus DNA in cerebrospinal fluid or in a brain biopsy specimen. Characteristic evidence of the damage caused by PML in the brain can also be detected on MRI images, which classically show multifocal nonenhancing lesions without mass effect. The most common area of involvement is the cortical white matter, but the brainstem and cerebellum may also be involved.

In multiple sclerosis: Natalizumab was approved in 2004 by the FDA for multiple sclerosis (MS). It was subsequently withdrawn from the market by its manufacturer after it was linked with three cases of PML. All 3 initial cases were taking natalizumab in combination with interferon beta-1a. After a safety review the drug was returned to the market in 2006 as a monotherapy for MS under a special prescription program. As of May 2011, over 130 cases of PML had been reported in MS patients, all in patients who had taken natalizumab for more than a year. While none of them had taken the drug in combination with other disease-modifying treatments, previous use of MS treatments increases the risk of PML between 3 and 4-fold. The estimated prevalence of PML in MS is 1.5 cases per thousand natalizumab users. Around 20% of MS patients with PML die, while most of the remaining are importantly disabled. (Wikipedia)

For the most part it is like MS on steroids. You have to have the JC virus to get the PML virus. In MS you must be on Tysabri for now.

Good luck
Lisa
Moderation Team

[MSer102]

You have to have the JC virus to get the PML virus. In MS you must be on Tysabri for now.

I'm not sure that came out quite right. The PML virus IS the JC virus. There isn't another PML virus you get after you get the JC virus. The JC virus is what causes PML. I think that should have said that you have to have the JC virus to get PML. If you don't have the JC virus you can't get PML just like you can't get chicken pox if you don't have the herpes virus for chicken pox.

"In MS you must be on Tysabri for now" didn't come out quite right either. That makes it sound like its impossible for people with MS to get PML from any other medicine - only Tysabri - and that isn't true. I think what that should have said is that in people with MS the only ones who have so far gotten PML from their treatment medicine are the ones who are on Tysabri. But people with MS are being treated with other medicines that have caused PML in people with other conditions. It might just be that people with MS who are on Rituxan haven't developed PML because they didn't have the same risk factors as people who used it for other conditions.

Tysabri isn't the only medicine that can cause PML is somebody with MS. Its just the only one so far that has caused it in people with MS. So it isn't impossible for people with MS to develop PML on other medicines its just that it hasn't happened yet.

[22cyclist]

MSer102 You are right: That is what I get for writing with cog fog. I didn't mean that JCV and PML were separate viruses. I didn't much think about off label uses for drugs, or drugs used for duel uses psoriasis and MS etc. I was just thinking of the drugs used in general for MS. I was not thorough enough.

Thanks for correcting that!

Lisa
Moderation Team

[ms man]

I've done 50 Ty infusions.Is there an infusion number where you no longer risk PML? Is there a PML free zone?

You get to a point where it may be too risky to do Tysabri but what's that point?

[MSer102]

Once you have the JC virus you are NEVER completely safe from developing PML if your immune system is compromised like it is with Tysabri and other medications. Not ever.

And if you don't have the JC virus there is always a chance that you can pick it up somewhere so you still can't think you'll ever be completely safe. And there's a small chance that you could have a false negative on a JC virus test so you never really can be sure. Biogen says that any positive JC virus test should be thought of as being positive.

The other two risk factors are more than 24 treatments of Tysabri and a history of immunosuppressant medications. I saw a presentation somewhere that said that all three risk factors raise the probability of PML to something like 1 in 80 and that a smart doctor would never continue a patient like that on Tysabri.

All of this is stuff is on the Tysabari website. http://www.tysabri.com/pml-risk.xml. It sounds like there are some things about Tysabri that you probably should have known a long time ago. Maybe its time to have a serious talk with your doctor about it?

[ms man]

Once you have the JC virus you are NEVER completely safe from developing PML if your immune system is compromised like it is with Tysabri and other medications. Not ever.

And if you don't have the JC virus there is always a chance that you can pick it up somewhere so you still can't think you'll ever be completely safe. And there's a small chance that you could have a false negative on a JC virus test so you never really can be sure. Biogen says that any positive JC virus test should be thought of as being positive.

The other two risk factors are more than 24 treatments of Tysabri and a history of immunosuppressant medications. I saw a presentation somewhere that said that all three risk factors raise the probability of PML to something like 1 in 80 and that a smart doctor would never continue a patient like that on Tysabri.

All of this is stuff is on the Tysabari website. http://www.tysabri.com/pml-risk.xml. It sounds like there are some things about Tysabri that you probably should have known a long time ago. Maybe its time to have a serious talk with your doctor about it?

Not a rosey disposition.