MS quiet progression: Expert discusses new research, treatment

Scientists have made significant advances in treating multiple sclerosis (MS) in recent decades, with a number of treatments for the neurodegenerative disease approved or in development. But one issue that’s been more challenging to address, researchers say, is MS quiet progression — when there aren’t new visible lesions or relapses but symptoms slowly get worse.

Multiple Sclerosis News Today spoke with Regina Berkovich, MD, PhD, a renowned MS specialist in West Hollywood, California, about the latest developments targeting MS quiet progression as well as the role of lifestyle factors.

This interview was excerpted and lightly edited for clarity.

AB: What are some of the current trends and developments in multiple sclerosis research that patients should know about?

RB: In my opinion, it develops in a few different directions. And without going much into the details, I would say that the main focus seems to be on addressing the question of progression. At this point, we have been very successful over the last 20 years in learning how to address acute inflammation in MS, prevent exacerbations, lesions, and new lesions on MRI. What we have been less successful in is addressing that quiet progression that would occur nevertheless and would result very frequently in disability not associated with the exacerbations, not associated with the new lesion formation.

As an MS specialist, I frequently encounter patients who would say, “So, doctor, you said I had no new lesions. I have no activity on MRI, and obviously I didn’t have relapses. I didn’t have any need for the use of steroids. And yet, you see yourself, and I’m experiencing it every day, that I’ve progressed, I no longer can work in my full capacity. I no longer can keep my full-time job.”

And it’s beyond the regular aging, because that could be a young individual. It could be an individual in their 50s or 40s. And that’s obviously something that needs to be addressed very urgently at this point. And that’s why I’m really happy that there are different directions going into evaluation of that quiet inflammation, and progression not associated with relapse activity.

I have a PhD in pharmacology, and that’s why I look at it from the standpoint of pharmacology. And I would say that I’m very happy to see that those developments are in different pharmacological classes addressing potentially different targets. And that is very promising because, unfortunately, the truth is that clinical development is extremely unpredictable. So, we can see that a medication can get to [a] Phase 3 [trial], which is usually expected to be the last step before the FDA approval of the medication. And even us getting to the end of Phase 3 doesn’t mean that this medication will make it to the market.

And why is that? Why don’t they make it to the market?

Because it could be that the planned efficacy would not be confirmed. And the medication will have to be — after an enormous amount of effort, time, and money invested into the development of it — will have to be abandoned completely, even though there were multiple, numerous positive publications. And remember, no medication will come to the last stages, Phase 3, until it succeeds in all the previous steps.

And I think it’s so important for people to understand that a positive animal study is just the beginning. It’s so far from the endpoint of the FDA approval. So, a positive animal study eventually leads to different controlled studies and then Phase 1 study on humans and then Phase 2. And every phase takes time. And every phase has a risk of not being successful and being the end of the development of that product. So that is why I really welcome those many different directions, that out of those many directions, hopefully two or three, or maybe even only one, hopefully will be successful.

Are there any lifestyle factors that play a role in quiet progression?

Yes, absolutely. I would say that this is especially important as we are waiting for the new medications to be approved, because that is where we have very little impact. We cannot speed up that process. But what is completely in our hands is how we live our lives, what choices we make in our daily lives. So, what we do on a day-to-day basis, the diet and the level of physical activity, is a huge factor, probably comparable to the effects of successful treatment. One thing I can tell you as a practicing MS specialist, that without that commitment, no treatment will be successful if a patient does not address lifestyle factors.

If a patient is on the most efficacious treatment but engages in minimal physical activity, faces minimal intellectual challenges, and eats a poor diet with a high inflammatory impact, with constant stress, smoking, being overweight, unfortunately, all of that will be working completely against any good that medication can do. So sometimes it’s easier to say it than do it.

But I would say that I usually recommend that my patients start with very simple goals and feel good about achieving those goals instead of committing to, let’s say, twice-a-week exercise to the point of exhaustion. I would rather suggest that they exercise daily for five minutes. Everyone can spare five minutes, right? And it doesn’t matter what type of exercise you do, because the level of performance will be different based on how limited the abilities are, right? It could be any type of exercise or movement you can do. If you can move your arms, then exercise your arms. And if you have limited abilities, just exercise within that limited ability. But do that because the most important thing at this stage of MS is preserve what you have, because we might have better and more promising medications, and preservation of current functions and improvement to your ability through your lifestyle is a huge investment for the future, I would say.

Are there any specific dietary recommendations for multiple sclerosis?

They are a little bit controversial in terms of the fact that not everyone would agree with everything and not every person can follow every recommendation. I would not say that one size fits all. This is not the case. Then there are personal food sensitivities, and some foods will not be recommended for some people. So, everything needs to be discussed with your treating physician and perhaps a nutritionist.

Restriction of salt and sugar is always a very important first step. And I would say that hydration cannot be overestimated. Proper hydration is very, very crucial.

Do you have any advice for finding a good neurologist for people with MS?

Ideally, MS should be treated by an MS specialist or neurologist who has extensive experience in treating MS and has treated multiple MS patients. And if I were to look at a choice of different neurologists, I would say try to choose the one that is open-minded, that is not limited to the choice of the medications they prescribe to one, two, or three, but has the open mind to consider different medications for different patients.

The ideal specialist is someone who will be serving you personally and not treating you with a cookie-cutter approach.

Is there anything else that you’d like to add today?

I think that the current situation in MS research development is very promising. I’m very much looking forward to many new DMT [disease-modifying therapy] medications with new unique mechanisms being approved.

I also think that within the spectrum of already available DMTs we can do a lot of good if we implement the open-mind approach and remain realistic in assessing DMT risks versus risks of inadequately treated MS.

I would like to finish on an optimistic note and say that, with the help of your publications, everyone should understand that we need to do everything in our power to prevent MS activity and progression now, so that by the time our bright future is here and the new medications become available, our MS patients are at their best possible level of functioning.