It seems a patient suffering from severe lymphopenia for 3.5 years has died of pneumonia recently and is believed to have been the first PML case for Tecfidera. The deceased has been on Tecfidera for 4.5 years – starting the medication during the clinical trial, ENDORSE. Lymphopenia, a severe low white blood cell count, is a known risk for Tecfidera users. PML is caused by the JCVirus. There is a JCVirus blood test available.

In the past 20 years, four psoriasis patients have also died of PML from dimethyl fumarate, a main ingredient in Tecidera. Currently 100,000 patients are taking Tecfidera. It is a leading treatment plan and the number one oral drug for multiple sclerosis. “With one case being reported out of more than 100,000 patients, patients may be willing to overlook safety concerns given Tecfidera’s impressive efficacy.” (zacks.com)

Looking to Tysabri, another multiple sclerosis treatment with the PML risk, we learn 23% of 495 cases died (111 patients) since 2004. (bostonglobe.com) “The majority of the PML survivors have a poor functional outcome.” (tysabrimsnewschannel.com) “There is no known treatment, prevention, or cure for PML.” (tysabri.com)

Know the Risk Factors of PML: 1) Use of Tysabri, Tecfidera and “prior use of certain medicines that can weaken your immune system” (tysabri.com); 2) Longevity on the risk medications; 3) Severe lymphopenia or prolonged low white cell counts; and, 4) Positive JCVirus blood test. Patient risk for PML increases over time on Tysabri. Will that be true for Tecfidera?

Know the Symptoms of PML: 1) Cognitive issues; 2) Personality & mental changes; 3) Motor function; 4) Change in muscle control; 5) Uncoordinated walk; 6) Hemianopsia or blindness in over half the vision; 7) Double vision; 8) Seizures in 18% of patients; 9) Symptoms vary with affected area of the brain; and, 10) increase in “MS-like” symptoms. (ms.about.com)

PLEASE NOTE: PML is often confused with an MS relapse and comes on slowly over days and weeks. When in doubt, find out! Early detection saves lives.

So what is my plan as a Tecfidera patient? First, I checked my white cell counts from my latest blood test in August including leukocytes. Second, I plan to have a new JCVirus test as soon as possible. Finally, I plan to stay on the medication while monitoring my white cell counts and having the JCvirus test every three months if possible. There is no denying the risk nor the efficacy of Tecfidera. It is my believe that I am more likely to become severely disabled in the future from MS than I am from PML on Tecfidera – at this time. The key is being a smart consumer of the medication – know the PML symptoms and seek routine white cell and JCVirus tests.

For more information check-out: http://multiple-sclerosis-research.blogspot.com/2014/10/bad-news-as-first-pml-case-appears-to.html, http://www.reuters.com/article/2014/10/22/us-biogen-results-idUSKCN0IB19720141022 or Google the topic – plenty to read out there. Image from: www.doctorwellgood.com. #MS #multiplesclerosis #MSTreatment #MSresearch #Tecfidera #PML #PMLdeath

Watch my new YouTube video on the topic at: https://www.youtube.com/watch?v=-roJHy_I7v0.