Tecfidera has only been approved for about month. I started taking it 5 days ago, and, wouldn’t you know, eyebrows are already raised. There have been some reports floating around about a possible connection between Tecfidera and the development of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.
This is what I have found so far, only 4 psoriasis patients in Europe who have been treated with drugs that contain Fumaderm over the last 19 years have developed PML. 347 MS patients using the drug Tysabri, which also contains Fumaderm, have developed PML. That’s since Tysabri was approved in 2007, only 6 years ago to treat Relapsing Remitting MS (RRMS). So, it seems to me that PML does not become a threat to my health unless it is used in Tysabri, to treat my MS.
My reality is:
I’ve had RRMS for almost 20 years.
I began taking other disease modifying drugs (DMD) about 17 years ago.
Until now, I’ve not been overly concerned with progressing to Secondary Progressive MS (SPMS). What makes now different? I stopped all DMD roughly 2 years ago. A little more than 1 year ago, I entered the most severe relapse that I’ve had to date, and it has lasted more than a year. Could it be that the DMD’s had delayed my progression to SPMS. By stopping all DMD drugs, could I have allowed SPMS an opportunity to take hold?
I did not take the earliest approved oral DMD because my Neurologist encouraged me to be patient and wait for Tecfidera, based on the limited information there was about ALL of these drugs. He deemed Tecfidera to be the best for me. He also wanted me to continue the DMD that I was using, until Tecfidera was approved. I did not.
So here I am, 5 days into Tecfidera, with this new information. I am not the least bit deterred. In a perfect world I would give any new medicine more time on the market before I used it, but my world is not perfect. I am now 50 years old and at a crossroad. If I were to wait 10 years before going back on a DMD (so the drug could be on the market longer), I would be that much closer to SPMS. I’m not willing to wait any longer. All of the data indicates that taking Tecfidera is not a life threatening-risk.
As MSers, these are the most difficult decisions to make. No one should be judged for the choice they make, unless you are willing to take the disease, life WITH IT, and all of the uncertainty of its future.
I wish us all well,