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My neurologist mentioned a new multiple sclerosis acronym to me called PIRA. PIRA stands for progression independent of relapse activity. PIRA was a hot topic at the European Committee for Treatment and Research in Multiple Sclerosis NeuroWebinar in May 2023. During that webinar, several neurologists presented on the progression of MS without a relapse. PIRA has the potential to change the approach to treating and understanding progression in relapsing forms of MS and what that looks like through the lens of a person living with MS.

Up until now, I have been under the impression that my MS is only progressing when I am in the middle of a relapse. Typically, a MS relapse is diagnosed once a patient reports symptoms and then that patient gets an MRI, which shows active lesions. So, a big deal for me is when I get my bi-annual brain and spine MRI and it shows no active lesions and no new disease activity. Active lesions are usually spotted on MRI film by using gadolinium contrast during an MRI. 

During the ETRIMS NeuroWebinar, Dr. Carmen Tur, at the Multiple Sclerosis Centre of Catalonia, in Barcelona, presented the following evidence. The evidence suggests PIRA is relatively frequent, said Dr Tur, who led a Spanish study that followed more than 1,000 people for more than 25 years after a first demyelinating event, or clinically isolated syndrome. Around 25 percent of the cohort experienced PIRA, with the first event occurring at a median time of approximately seven years post-CIS. CIS is when a person has one neurological event, such as optic neuritis or transverse myelitis and does not have a second neurological event. If a person has a second neurological event, then the person no longer has CIS and now is considered to have MS. Dr. Tur’s study also found that patients who experienced a PIRA event within the first five years post-CIS had a more than 20 times higher risk of reaching an expanded disability status score of six, when compared to those with a later PIRA.

Clinical researchers are are trying to understand the PIRA implications for MS and what treatments may be efficacious to slow PIRA. The current research shows that people with PIRA events are more likely to have their disability progress. 

So, what does this mean to me as a person living with MS. I think the first thing is that this gives me hope. It never ceases to amaze me how dedicated the clinical researchers are to solving the MS puzzle. This new information has the ability to redefine, and, possibly, create new definitions for MS. We currently have relapsing remitting and progressive definitions of MS. Now there is possibly a new definition of MS. With new definitions, your neurologist may be able to understand the type of MS you have and the best course of action to treat it. The more we learn, the brighter the future is for those of us living with MS.