MS news notes: Clemastine, MS retrospective, PIPE-791

Columnist Ed Tobias comments on the week's top MS news

by Ed Tobias | June 20, 2023

Welcome to “MS News Notes,” a Monday morning 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:

Myelin repair and clemastine

The Multiple Sclerosis News Today story “MRI method detects myelin repair with over-the-counter antihistamine” is one of those that you’ll need to read all the way through to understand its context.

Clemastine is an over-the-counter antihistamine that researchers have suspected may help people with MS. MS News Today published a story in 2017 about a clinical trial called ReBUILD, and how the medication — sold in the U.S. under the brand name Tavist — helped people with a chronically damaged optic nerve. Last year, a study began to observe the effects of combining clemastine with the diabetes medication metformin to see if the combination would repair myelin.

This latest story about clemastine reports on an analysis of MRI data from the ReBUILD trial. It quotes researchers as saying they have found evidence of myelin repair induced by clemastine based on this imaging. But read through the entire story and you’ll note that researchers say clemastine can only be partially effective at the doses currently being used.

The people in this study also were being treated with a disease-modifying therapy (DMT). So did that affect the study’s results?

Clemastine also can have a sedative effect, which might be troubling for people with MS who already have a problem with fatigue.

The study seems to be promising news, but there are still many unanswered questions. The researchers added that they hope better medications will be developed to do the important job of remyelination of damaged nerves. I hope so, too.

Cannabis oral spray nabiximols found to ease spasticity in MS

Reviewing three decades of MS treatments

I was diagnosed with MS in 1980, about 13 years before the first DMT was approved. So the retrospective opinion piece discussed in “30 years after MS was first treatable, challenges remain amid triumphs” brings back many memories for me. Among them are waiting for the first DMT to be tested, being thrilled to be chosen for a Phase 3 trial of Avonex (interferon beta-1a), and the joy of starting treatment. I believed there was hope for stopping my MS monster.

Since 1995, I’ve been treated with four DMTs. I think each of them has helped to slow my MS progression, but none has stopped it. And the retrospective cautions that for all of the gains in recent decades, “for the patient with advanced, progressive MS, all of those vaunted successes fall away, and it is almost like 30 years ago all over again.”

PIPE-791 study gets green light

PIPE-791 is a small molecule designed to enter the brain and block something called an LPA1 receptor, which seems to contribute to the inability of damaged myelin to repair itself.

“FDA clears way for Phase 1 study of PIPE-791 in healthy volunteers” reports that a clinical study of the investigational therapy to determine its safety and how well it’s tolerated could begin by the end of this year. That’s just the start of what is usually a lengthy clinical trial process, but it’s encouraging that another potential treatment aimed at protecting our short-circuited myelin is in the works.

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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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Mary Ann Lacaria-Cincinnati

I’ve had MS for 27 yrs. and now have PPMS. I truly believe a stressful marriage has caused this monster. I am wheelchair-bound, divorced and tired of this life I was dealt. I’m tired of never hearing anything to help those of us with PPMS

Ed Tobias

Hi Mary,

There's no doubt stress can play a role in MS and I'm sorry that could have had such an impact on you. You're right, more has to be done to treat people with PPMS (and SPMS, too). I'm glad that the retrospective piece, reported on in the story I highlighted, points out this need.

Scott L White

HI Ed - Interesting article about Myelin repair and clemastine, after a quick search it appears the clemastine is no longer available anywhere. I've had MS for 40 years was on Aubagio but now waiting to visit my new Dr. so he can hopefully prescribe something more effective. I would have no problem self diagnosing myself and starting a treatment including clemastine but it seems to be unavailable. Are you aware of any otc antihistamines that contain clemastine, Thx

Ed Tobias

Hi Scott -

The studies of which I'm aware all combine clemastine with a disesase-modifying treatment to obtain remyelination. And it's prescribed at a higher dose than is used in allergy medicines. So, it's worth speaking with your new doc about it but it's not just a matter of popping some allergy pills and hoping that your symptoms will improve.

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