MS news notes: Silent progression, ignoring treatments

Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:

‘Silent’ MS progression

Readers of the MS News Today website and Facebook page sometimes wonder why their MS is progressing even though they’re not having a relapse. Many people, apparently, have faced this type of scenario. I certainly have.

As the article “Progression without relapses drives most disability worsening in MS” reports, this condition is sometimes referred to as “silent” progression. The technical term for it is “progression independent of relapse activity,” or PIRA.

The article reports on a review of several studies in Switzerland that sought to better understand PIRA. Interestingly, the results suggested that PIRA accounted for at least 50% of all reported instances of worsening disability in people diagnosed with relapsing-remitting MS.

I think my relapses stopped a few years after I began using a disease-modifying therapy (DMT). But my disease continued to slowly progress, even though my diagnosis wasn’t officially changed to a progressive form of the disease until years later. I sort of slipped into secondary progressive MS without any bells or whistles.

I wonder if the way we label the stages of MS makes a whole lot of sense. This article adds validity to that question.

Recommended Reading

September 27, 2023 News by Marisa Wexler, MS

Neurologists share treatment preferences for older adults with MS

Why do some MS patients ignore their treatments?

I didn’t take my first MS treatment — Avonex (interferon beta-1a) — as seriously as I probably should have. I’d delay taking the weekly self-injections or skip them entirely. After about seven years of jabbing myself in the thigh, I quit taking it altogether and only started treatment again after switching DMTs.

Several things may cause MS patients to ignore their treatments, and many are mentioned in the article “How well MS patients adhere to treatment tied to certain factors.” They include the length of time a patient has been using a DMT, medication side effects, and even a patient’s level of education.

“One study found that patients who paid more than $200 out of pocket for their DMTs were up to seven times more likely to stop taking their self-injectable medications,” the article noted. I think the issue of cost is more of a concern for people than perhaps is generally realized. I believe it should be considered every time a treatment decision is made.

Also notable is that this study primarily looked at people using injectable DMTs. I suspect that people may better adhere to treatment if it comes in the form of infusions and pills rather than injections. That was the case with me, at any rate.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.