Never having been offered, let alone received any disease modifying therapy, I can address the subject of disease modifying therapies, and their side effects, with complete impartiality. Of course, the reason for the lack of any medication is because none has yet been approved for use with MS patients who have the primary progressive type.
Let’s start by looking at the drug natalizumab and its relationship with progressive multifocal leukoencephalopathy (PM)L. Natalizumab, which goes by the brand name of Tysabri, has been the center of controversy and concern for years over whether patients on that therapy run the risk of developing PML. This is a life-threatening viral infection caused by the John Cunningham (JC) virus.
The reason that natalizumab has never been offered to me is that it is used to treat highly active relapsing-remitting MS (RRMS) in patients. However, it has been associated with the development of PML.
A previous news story on this site headlined “Guidelines Issued for Monitoring of MS Patients on Natalizumab Treatment” said: “Before the age of immunomodulating biological drugs, PML was associated with immunosuppression but not with autoimmune diseases such as MS. The JC virus is common and usually benign, and infects an estimated 60 percent of the European population. But the type causing PML is a mutated form that can enter into the brain, and researchers are puzzled as to why the virus mutates in MS patients on natalizumab.”
A panel of neurologists from the U.K. and Ireland was put together by pharmaceutical manufacturer Biogen, but worked independently of the company. Members did not receive any payment for their work.
MS patients have safety considered
They analyzed available data from clinical trials and real-life use. Their findings were published in the article “Stratification and monitoring of natalizumab associated progressive multifocal leukoencephalopathy risk: recommendations from an expert group,” which appeared in the Journal of Neurology, Neurosurgery & Psychiatry.
So, it seems that with disease modifying drugs, because all DMTs are drugs, patients everywhere need to be aware not only of side effects information provided with the medication but also with others that may occur without warning.
I have been looking at the side effects of new MS drugs for some years now and have been generally disappointed by what has turned up.
Things like unsteadiness and fatigue — as if we don’t have enough already — are bad enough, but then we get to the rare ones. I cannot tell you how many times “death” has been listed.
But that’s ok as no one reads the patient information sheets, do they? Well, call me a nerd if you like but yes, I do. And, I have to say, that is one reason that no DMT has ever seemed attractive to my way of thinking.
It must be time for scientists at the big pharma companies to develop some treatments that don’t carry the risk of such terrible side effects. The first one that does is sure to make his employer a great deal of money.
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