I have been diagnosed with RRMS, 5 months ago and been using Dimethyl fumarate (tecfidera) since then. Is there anyone using the same medicine for long time because i am very fearful about PML brain infection which i have read on internet. I am currently experiencing very mild symptom of numbness if i sit for too long. Rest is fine.
Hi, ive been on Tecfidera for about 5 years. No side effects at all. From memory, PML is so vanishingly rare, from a Prof G selfie i think its about 89k - 1 that i wouldnt dwell on it. Relax. Tec is a great DMT.
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I have, similarly, been on Tecfidera and now changed to Gilenya, and I too worried massively about PML because most of my symptoms have indeed been stuff like weakness in one side of the body and personality changes, memory problems and such which I heard was a part of PML.
I kept nagging my doctor about it for quite a while despite his reassurances that PML is super duper rare, but eventually did a spine fluid check to see the concentration of the virus or something. It was apparently fine (I live in Japan and I do not speak Japanese quite THAT well, so there’s a limit to how much I understand), but well bottom line I guess from what I could understand is that there are ways you can be checked that at least seem to hint of whether it’s coming or not.
I am now deeper into the MS world a bit I feel and so I worry about it less, and you might have a similar experience as time moves on, but bottom line it seems is that our initial medications like indeed Tecfidera are really not that massively dangerous when it comes to PML, that’s much more about the later more powerful treatment types. Or I suppose if you are doing IV steroids for months in a row or something I imagine. Generally it’s a matter of “we cannot say 100％ you’ll DEFINITELY NEVER get it” so it is mentioned as a possible side effect, but I do notice at least my doctor lights up and actually starts talking about it being a concern when the talk comes to other harsher types of medication, so well I imagine if your doctor isn’t the tiniest little bit worried, then maybe you can at least relax a little bit.
Everything I google around and read in research papers tends to fall in the “was there even ANY one person who got it while on this medicine?”-level of things, so while there ARE people who get it, it seems to be vanishingly few in general from the standard recommended medications. Apparently. I’m not exactly building you a massive castle of confidence with my flimsy way of saying it I imagine, but I at least calmed down a little over time as stuff like this kept piling up.
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