So I’ve received a letter of the MS consultant saying that as I’m secondary progressive I can have Siponimod and an appointment to discuss starting the treatment (if I chose to do so) is to follow in the next few weeks.
Thing is I’m a bit confused as to why I should chose to accept it, and also concerned with the side effects.
Now, even that I’m SPMS, I’ve not had an obvious relapse for years, in fact I cant recall ever having one, I’ve just gradually got worse over the years (9 years), so each time I mention this to my consultant(s) I get told the damage to the nerves is already done and this means that over time the nerve endings at the point of damage slowly die off, hence over time getting worse.
My last MRI around 6 months ago showed the brain as “normal”, no lesions what so ever, and the last time I had a spinal MRI there were no new or active lesions.
So therefore I can only assume that my progression is down to exactly what I’ve been told over the years, “the damage is done and over time the damaged nerves slowly die off” !
So, heres my query/concern, if my progression to date is down to damaged nerves just deteriorating due to “time”, why take Siponimod, thats only purpose is to suppress the immune system, yet my progression is apparently not due to immune related relapses, but due to existing damage getting worse over time, especially knowing the nasty side effects that this drug comes with !!
As far as I’m aware Siponimod’s active ingredients cant repair already damaged nerves or turn back time, it can only lower the risk of progressing by further relapses, which I haven’t had, so is it worth taking the risks that this drug comes with if I’m being told that I show no signs of new or active lesions ?