MS news notes: Silent progression, ignoring treatments
Columnist Ed Tobias comments on the week's top MS news
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.
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.
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Comments
David S Wrenn
Ed,
Thanks for mentioning PIRA. Unfortunately, it seems that many in the gener al neurology community and more than a few academic medical centers are "true believers" in this phenomenon. They just assume that it's part of the inevitable arc of this disease wherein RRMS morphs into CPMS. As most patients with PIRA show no new or active lesions on their MRIs they are at a loss to suggest specific DMTs or other therapeutic interventions. It's incredibly frustrating
Ed Tobias
Hi David -
I hear you. I think PIRA is a very real thing. It's a shame that some seem to depend only on MRIs to determine whether MS is progressing, rather than including physical exams and WHAT THE PATIENT TELLS THEM. My MS progressed for many years but my MRIs were stable. Fortunately, I have a neuro who does more than just look at an MRI image when we make treatment decisions together.
Ed
Terry Ross
Are we to understand that “progression” here means “increase in number of lesions,” or is a number of different things? In other words, how is progression actually measured? Thoughts? Thanks.
Ed Tobias
Hi Terry,
Our story reported on a review of several studies. It uses the term "disability accumulation" as measured by tests that included the Expanded Disability Status Score (EDSS),the Timed 25-Foot Walk Test (T25FWT), and the 9-Hole Peg Test (9HPT).
Ed
Rene Köck
Good evening, could there be some connection with so-called "Slowly Expanding Lesions"? Regards, Rene
Ed Tobias
Hi Rene,
Slowly expanding lesions are also called smouldering lesions. I think it would be accurate to say that they're viewed as being indicative of silent progression.
Ed
Patreesha Poole
Hi Ed
Really interesting piece. However, could you make clear that it’s not intended to cover those of us who have PPMS, and SPMS, as we don’t have relapses, just progression. As we’re all different the disease can progress faster or slower, and our symptoms can worsen without any new lesions being found.
best, Pat
Kate Brotzman
That’s what I ask my neuro all the time my MRIs have been stable for 30 years but my disability worsens. They should measure brain atrophy
Ed Tobias
Kate,
FYI, MRIs can measure brain atrophy and your neuro should be looking at that. Maybe something you want to ask him or her about. But, some disability - usually below the waste - occurs on the spine before it can be seen on an MRI.
https://multiplesclerosisnewstoday.com/2017/06/27/ms-multiple-sclerosis-patients-walking-is-getting-worse-though-his-mri-is-stable/
Ed
Robert Lindley
Hi Ed.
A close relative, living in the UK, has had Primary Progressive MS for a number of years and is now wheel-chair bound and has a live-in carer. There seems to be much more discussion of RRMS than PPMS in the medical and general public media in ther UK. Is that true of the US and where are the best sources of current awareness of PPMS research in the US? I'd be grateful for your advice. Robert