MS News That Caught My Eye Last Week: Predicting Disease Progression, Temelimab, Trigeminal Neuralgia
Combined Data May Predict Person’s Risk of Advancing From CIS to MS
Clinically isolated syndrome is sometimes called “early MS.” It’s the diagnosis used when someone’s symptoms don’t quite look like MS, but it does appear that MS is lurking. It may take years for an actual diagnosis to be made. Researchers hope this group of data might make it possible to determine who is more and less likely to wind up with that diagnosis. This could result in better treatment.
A novel algorithm that combines genetic, environmental, and clinical data could be useful for predicting whether people with a first onset of multiple sclerosis (MS)-like disease — known as clinically isolated syndrome (CIS) — will experience relapses or a worsening of their disease over time.
The algorithm may be particularly useful for selecting patients in clinical trials, its researchers noted.
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Final Data Likely Soon in Phase 2 Trial of Temelimab for Relapsing MS
Temelimab is a monoclonal antibody that researchers hope will prevent the inflammatory responses that cause damage to the myelin sheath. Earlier results showed that treatment with this investigational medication slowed the worsening of disability, reduced the loss of brain volume, and preserved myelin, but only when the highest trial dose was used. This latest trial explored that higher dose. Hopefully, the results will be positive and allow progression of the clinical trial to Phase 3.
A Phase 2 clinical trial into the safety and tolerability of higher-dose temelimab as a potential therapy for relapsing forms of multiple sclerosis (MS) is now complete, and top-line data is expected by late March, its developer, GeNeuro, announced.
The ProTEct-MS Phase 2 trial (NCT04480307), conducted at the Karolinska Institutet’s Academic Specialist Center in Stockholm, investigated temelimab, at higher doses than previous trials, in 40 people with relapsing MS and evidence of disease progression in the absence of relapses.
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Study: Trigeminal Neuralgia Affects More Than 3% of Patients
Facial pain affects only a small percentage of people with MS? From what I read on social media every day, it seems to affect a much larger group than that. Though not all of them know what their facial pain is called, they certainly feel it. Have you experienced trigeminal neuralgia? If so, please share your thoughts in the comments below.
Trigeminal neuralgia, a chronic pain condition characterized by shocks or burning sensations in the face, seems to be much more common among people with multiple sclerosis (MS) than in the general population, according to a review of published studies.
This condition also is more prevalent in women with MS than it is in men, although the reasons for this are not yet clear.
Understanding the prevalence of trigeminal neuralgia could improve pain management among people with MS, the researchers noted.
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Comments
Lesley Holden
I was diagnosed at 64 with MS, and at almost the same time, they found two meningiomas, but the first time I experienced Trigeminal Neuralgia, all I could do was to scream...I had never known such pain. I now keep an oral anesthetic on me and push down as hard as I can on the tooth, until it subsides. My TN runs from my eye tooth to my eye and then ear. As I also have tinnitus, my pains are all intermingled
Ed Tobias
Hi Lesley,
I'm sorry you're in such pain but I hope that anesthetic continues to do its job.
Ed
Anthony Hoysted
My first-ever identifiable MS symptom - long before anyone knew what was happening - was tingling and numbness on one side of my face with no identifiable cause, lasting several weeks. Not pain, but related to the trigeminal nerve. Thankfully, it resolved spontaneously and has never returned, although I am now coping with progressive MS.
Ed Tobias
Hi Anthony,
Thanks for your comments and I'm glad your pain has resolved.
Ed
Jane Sharp
I have had MS for 30 years but the last 2 years have been the worst, Trigeminal Neuralgia is terrible. It can be just a burning sensation in the left side of my face or a sharp electric shock when I eat, clean my teeth or just wash my face. Then there's the really bad one which is like a hot needle going from my teeth in to my brain, the first time this happened I just screamed and when is subsided cried my eyes out. The left side of my face felt bruised afterwards. I'm a mother but this was far worse than childbirth.
Ed Tobias
Hi Jane,
Thanks for sharing that information and I'm very sorry you're having such pain. I think you're confirming my feeling that 3% is far too low an estimate for people with MS who suffer TN pain.
Ed
Collette Howell
I am 74 and was diagnosed with active SPMS in 2915.
Last month I was reclassified with inactive SPMS.
One of my very first symptoms occurred about 1998 when I experienced numbness and tingling in my mouth, tongue and teeth…..accompanied by ringing in my ears and frequent strong pain in my jaw near my right ear. Throughout the intervening years I went to 5 Neurologists. With additional symptoms being added.
Now I have increasing pain, I have cognitive impairment, my ears ring incessantly and my teeth often vibrate. I have not had the jaw pain in years. But, I increasingly have headaches and foggy thinking and extreme fatigue. I really hope I never have the jaw pain you have described.
It is all a lot to handle. The pandemic has made it all worse.
Ed Tobias
Hi Collette,
Thanks for taking the time to comment. I'm sorry you've had those problems. Yes, it's a lot to handle. You're not alone, of course. I've written more about TN and the people who suffer with it in my MS Wire column that will be published Friday.
Ed