What constitutes highly active RRMS?

Symptoms and treatments
1

Hi I was diagnosed when 30 and am now 43.

My MS, until last week (maybe 12 mths ago), was categorised as sensory-benign. I’m now being told I need some pretty atrong drugs from category 2. I’m wondering what the interpretation of highly active RRMS is?

I’ve found this online but it doesn’t seem to fit my situation:

What is “highly active MS”? The term highly active MS has not been precisely defined but the most important features include frequent relapses with incomplete recovery, and/or high radiological burden of disease, rapid accrual of disability after disease onset, with otherwise typical features of MS .

Based on MS decision trees I don’t qualify for category 2, I’m active and fully functioning (to date! Who knows what’s around the corner!) and I’ve had three short sensory relapses in 6.5-7 years. I do have 3 new very small (and in neuros words unconcerning) lesions in the brain - thankfully as I know spinal cord is a different matter.

So ahead of my appt on Monday I’m trying to get a grasp on this rationale as 12 mths ago I was eligible for category 1 drugs and now not…?

I’ve asked a lot of questions around this and accept drugs are likely needed now but some help on this point would be hugely appreciated.

Thank you in advance for the support

2

Hey, I had a pretty similar experience to what it sounds like you’re going through. Originally it was believed my ms was quite benign so I wasn’t offered any drugs then I had a relapse during covid and suddenly I was offered Tysabri. I couldn’t understand it at first since it seemed a big leap from nothing to a drug with major potential side effects. But then I’ve come to understand that the long term results are better if higher category drugs are used earlier with highly active ms. Obviously the decision is up to you but to me, it’s better that i’m doing something to halt the ms rather than nothing.

Good luck with whatever you choose

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3

Thank you @AAJM i guess it does sound similar but what constitutes it being categorised as highly active?

By the way I am persuaded to do something but I think Tecfedira seems effective too with less potential risks