Okay. Maybe it’s not PPMS after all.

In my last post I was expressing concern that my MS might not be the remitting recurring type that most people get, but might be another form called primary progressive.  This is a problem in that there are currently no disease modifying medications approved for PPMS.  One drug for RRMS, Gilenya, was in late trials for PPMS and many people had their hopes pinned on it.  My doctor had been talking about switching me from Tecfidera to Gilenya anyway so my thought was that I might be covered whichever form that I actually had.

Unfortunately, the day before my doctor’s visit, Novartis announced that the Gilenya trial for PPMS failed.  It did not have a statistically different effect than the placebo had.  I brought up the possibility of PPMS with my doctor.

My doctor made a case that I do not have PPMS and that it makes sense to treat it as Secondary Progressive MS.  This is the form where a person has remitting recurring MS and at some point it doesn’t remit anymore and gradually gets worse.  My original MRI scans showed active lesions on the brain and were more typical of RRMS.  Then I got on disease modifying drugs fairly early.  She felt that this may have prevented new flareups that are common in RRMS.  It’s just that my initial symptom never completely remitted, which can happen sometimes.

Given that there are not any different treatment options available for PPMS, I guess that sounds good to me and we will go with it.

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