This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Vesta, good question. My doctor doesn't think the Copaxone is helping me at this point.

ElliotB wrote: ↑Fri Aug 23, 2019 2:57 am I have been doing some research about PML and found this very informative article titled "Everything You Should Know About Progressive Multifocal Leukoencephalopathy (PML) Virus"

Here is a link:
https://www.healthline.com/health/plm-virus

Thanks for the link. To emphasize the quote from the NINDS page on PML.

NINDS wrote: Prognosis:
In general, PML has a mortality rate of 30-50 percent in the first few months following diagnosis but depends on the severity of the underlying disease and treatment received. Those who survive PML can be left with severe neurological disabilities.

https://www.ninds.nih.gov/Disorders/All ... ation-Page

PML is no walk in the park. In the following study, people on Tysabri that developed PML had roughly an 87% chance of becoming moderately to severely disabled from the PML.

RuSmolikova wrote:Among 38 patients with Karnofsky performance ratings by their physicians at least six months after PML diagnosis, only five were in the "mild" disability category. Half were rated as moderately impaired, and 37% were severely disabled and required custodial care.

Found this interesting article titled The risk of the JC virus for people with MS:

Here is the link:
https://www.medicalnewstoday.com/articles/311022.php


Also found this article from 2017 titled Neurologists: additional PML cases in MS not a major concern for Ocrevus:

Here is the link:
https://www.pharmaceutical-technology.c ... n-ocrevus/

This is a brain on PML.

ElliotB wrote: ↑Sat Aug 24, 2019 4:41 pm Also found this article from 2017 titled Neurologists: additional PML cases in MS not a major concern for Ocrevus:

Here is the link:
https://www.pharmaceutical-technology.c ... n-ocrevus/

Thanks for the link. However, that article is almost 2 years old and it was written for investors to assuage their fears that Roche's new drug Ocrevus might be a financial failure. PwMS are just a bankroll to those authors.

That makes sense. BUT as it turns out, they may have actually been correct as there have not been any cases attributed to the drug. There were a handful of PML cases but the 'explanation' is that they were carry over cases. BUT who knows what will happen in the future. I don't know how long after other drugs were first introduced that cases began to appear.

What I find really odd is that there is no requirement for JC virus testing, only a hepatitis panel. I insisted that my doctor test me for the JC virus, should have the results next week.

Frankly I am not thrilled with making the change but at this time it is likely necessary for me.