MS news notes: EBV, stopping a DMT, 3 treatment reports
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. This week, the stories cover research presented at the joint meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS), held earlier this month in Milan.
Another angle on MS and EBV
A lot has been written about the connection between the Epstein-Barr virus (EBV) and MS. Most people carry EBV, a member of the herpes virus family that causes mononucleosis, in their body. But only a small number of them develop MS.
Research has reported that being infected by EBV raises the risk of developing MS by 32 times. Why is that?
As reported in the MS News Today story “ECTRIMS 2023: New research may help explain EBV and MS link,” it may be because of a combination of faulty immune regulation, genetics, and particular EBV strains.
“In statistical models, the scientists calculated that patients who had genetic risk factors and were infected with one of the EBV strains that upregulates HLA-E [an immune-modulating protein] were up to 260 times as likely to develop MS, compared with people without these genetic factors infected with other EBV strains,” the story says.
To me, this fact is all the more reason to push full speed ahead for the development of an EBV vaccine. Would you agree?
Stopping treatment leads to new disease activity in study
I often see questions on social media sites like the MS News Today Facebook page from people wondering if they should stop taking their disease-modifying therapy (DMT). These folks think that if their disease is stable, there’s no need to continue with their DMT, which may be expensive, difficult to administer, and cause side effects.
The takeaway from the story “ECTRIMS 2023: More disease activity when treatment stopped” is that no, patients shouldn’t stop.
This study aimed to determine if DMTs could be discontinued in people with stable disease. But the study was ended early because a number of participants who stopped their treatments experienced new disease activity that exceeded the study’s guidelines.
On the other hand, the story reports, “None of the patients who continued their DMT saw substantial disease activity, relapses, or significant MRI activity during the trial.”
I stopped my Lemtrada (alemtuzumab) treatments after the usual two rounds of infusions. But that was following treatment with three other DMTs, and I was also approaching 70 years old. That was about five years ago, and my progression hasn’t been what I’d consider significant since I quit. But everyone’s MS is different, and in general, I think people should remain on a DMT for as long as they can.
If you’ve stopped your therapy, why did you do it, and what were the results? Please share in the comments below.
A trio of positive treatment reports
Three additional studies that were presented at ECTRIMS should be encouraging to people with MS.
Foralumab is an antibody-based nasal spray that’s being tested on MS patients. Notably, its testing has involved people with nonactive secondary progressive MS, for which only one medication to date — mitoxantrone — has been authorized in the U.S.
“ECTRIMS 2023: Foralumab seen to ease brain inflammation in SPMS” looks at a small study of six people treated with foralumab. In that group, a decrease in microglial activity was seen in five of the six people. (Microglia cells in the brain may play a role in driving MS inflammation and nerve damage.)
Fenebrutinib is an investigational oral medicine designed to reduce MS inflammatory activity by reducing activity of B-cells and microglia immune cells. It does this by targeting Bruton’s tyrosine kinase, or BTK, a protein that’s required for this kind of inflammation.
“ECTRIMS 2023: Fenebrutinib lowers new lesions in relapsing MS” reports details of a study of 106 people with relapsing forms of MS whose symptoms started up to 10 years earlier. The study says that taking fenebrutinib for 12 weeks led to a 90% reduction in the number of new inflammatory lesions compared with a placebo. The patients being treated also had 49% fewer new or enlarging lesions after four weeks.
MS progression was the metric examined in a study discussed in “ECTRIMS 2023: Most on Zeposia see slower disability progression.” More than three-quarters of people with relapsing forms MS who received Zeposia (ozanimod) in a trial named RADIANCE and its extension study, had no disability progression after eight years of follow-up. More than 1,300 patients with relapsing forms of MS were enrolled in the study.
There’s no cure yet for MS, but these positive studies are just a small slice of the work that’s being done to curb MS progression.
Did you find this column helpful? Please share in the comments below. You’re also invited to visit my personal website at www.themswire.com.
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.
About the Author
ROLAND TOMSICK
Is there any hopes of repair of the damage caused by PPMS ever happening?
Ed Tobias
Hi Roland,
There's always hope, and some research is being done to find a way to do that. Unfortunately, I don't think it's something that we'll see anytime soon.
Ed
Jayne
I am 67. First symptoms in my early 20s, no MRIs yet, but there were Nuclear Magnetic Resonance imaging (NMR). No conclusive results at that age. L'hermittes sign remained, mild sensory symptoms remained, no docs diagnosed me, until age 53, an exacerbation, again mostly sensory--numbness, etc. Docs suggesting carpal tunnel, I insisted on MRI, very conclusively MS. Went on Rebif, most symptoms had subsided, but after starting Rebif, returned with a vengeance. After a year, went off Rebif, no change. L'hermittes remained, sensory symptoms and balance issues remained. Fast forward to age 60 or so, MS specialist suggested Aubagio. Lasted 6 or 8 months on that, bad stomach problems. Forward to age 65, tried Vumerity. After 6 months, very bad stomach problems again. (Re-challenged both meds, same response). I am not on meds, and wonder if I simply do better off meds. Mild progression, mostly sensory and balance, mild spasticity, optical migraines. MS specialist would like me to start something. I don't think I want to at this point in time.
Ed Tobias
Hi Jayne,
That's quite a long and winding road that you traveled. I'm sorry your diagnosis was so tough to get and that the medications weren't right for you. MS treats us all a little differently. At 65 I'd probably have second thoughts about trying yet another med but it's really your choice after doing all of the research you can.
Ed
Alan M Dattner, MD
Hi again Ed,
Why a vaccine when there are other methods to kill or inhibit the spread of EBV that have worked in my hands and those of other docs that I know.
Gloria Corrigan
When I was about 67 my Neurologist recommended that I discontinue the Tysabri I had been on for 12+years. They said that because my "aging" immune system would probably not be actively creating new problems, the risks of staying on the med (JCV) were greater than stopping. I've been off of any DMT for over 3 years and have stayed totally stable. I tell everyone that I aged out of MS.
Ed Tobias
Hi Gloria,
I can understand why, at around 67, you stopped. And, over 12 years is a long time to be on Tysabri. I hope you have, indeed, aged out of MS.
Ed
Margaret
I was diagnosed in 1993. Started Betaseron by 1994. It’s the only DMD I have ever taken. It’s a hard one to stay on that long. I stopped it about 3 years ago and have had no disease flare ups or progression. I couldn’t stand the pain of the injections and side effects anymore. I’m 71 years old.
Ed Tobias
Hi Margaret,
I only jabbed myself with Avonx for about seven years before I couldn't take it anymore, but I moved to another DMT right away. It's impossible to say what course my MS might have followed if I had just totally quit. I hope your MS remains stable.
Ed
Tom A
Hello Ed- Regarding changes after stopping DMT: I had been on Betaseron since 1995; had some minor new MRI features here or there and then no new MRI evidence since 2001. Continued on Betaseron right through to 2017, when leg pain when walking influenced my doctor and I to try Ocrevus. I didn’t perceive anything from Ocrevus one way or the other. Then Covid came along, my doctor was on sabbatical, no one could give me any answers, so I stopped. I had no negative effects from stopping Betaseron or Ocrevus (which was two years total treatment with added 12 months to regain normal immune functioning). Noteworthy, I have declined in some functions but this is interpreted as loss of reserve or nerve deterioration in prior “repaired” damaged areas, versus something new. Interestingly, I had a Neurofilament Light Level test, just to “see”, and it showed normal neurodegeneration typical of a 40 year old (I’m 65). But keep in mind that the test only hints at what is going on at the moment the test is given, rather than including anything prior from my 35 year history.
As to EBV vaccination, that might be worthy for infants, etc., to prevent the cascade of factors leading to MS (that the infant already has the genes for), but there is no clarity (at least from what I read) that EBV plays a role in ongoing MS once you’ve reached the tipping point of symptoms. We need more data on that- “Does a flare of EBV cause a flare of MS?” As far as widespread new vaccination to reduce public transmission, well, we see what the response to Covid was, why would EBV be any different?
Have a good one!
Ed Tobias
Hi Tom,
Thanks for all of that info.
I think your DMT experiences are typical of the one-size-doesn't-fit-all way MS presents itself, and its treatment options. What worked, or didn't, for me might not be the same for you. It's all about being able to make informed choices.
I agree that an EBV vaccine would need to be give to children. It's unlikely to help us old-timers, but I think it's possible that it could do to MS what the Salk and Sabin vaccines did for polio. "Does a flare of EBV cause a flare of MS." I never heard of a virus flaring, and I'm no scientist, but I guess that term might be used to describe a virus triggering a specific disease.
Ed
Tom A.
Yes, informed choices. We didn't have too much choice back in the beginning (I'll call it). Lot's of stuff to think about before starting DMT today; wish we had had more choices in the beginning. As to EBV, is survives latent in memeroy B cells once you've been infected (I read), and it can mildly reactivate in some situations (don't ask me what situations. they are complicated), so the question, as I understand it would be- Does further coming and going of the virus in an active state bring on an attack or other increased disease activity? Or was it a one shot deal only and the damage is done? I know I had an MS exacerbation several days after getting hit with the flu back in the 90's. And what about influence on PPMS and inactive SPMS? Just thoughts, questions. :-)
Ed Tobias
Well, the flu, I'm sure, brought a fever which could certainly have triggered an exacerbation...although it would technically have been a "pseudo exacerbation," because it was triggered by something external to your MS. So many questions, so little time.
Ed
Tom A
No, don't want to clog up the system with my comments; I really do this for what others may get out of it. Relapse immediately after the flu for me was a relapse that lasted at least a month with balance, leg and stumbling issues; which all then in the future came and went, and returned in SPMS form. There had been nothing like that prior, all new stuff. Perhaps a coincidence, but if I had to bet my life, I'd say no coincidence. Never missed a flu shot since and I'm on the Covid Vax train as well. Good day Ed, thanks for letting me share.