MS Update: Good News for Tysabri Users Who Are JCV Positive (2024)

MS Update: Good News for Tysabri Users Who Are JCV Positive (1)

byEd Tobias|

MS Update: Good News for Tysabri Users Who Are JCV Positive (2)

MS Update: Good News for Tysabri Users Who Are JCV Positive (7)

One of the many disease-modifying therapies (DMTs) that I’ve been on over the many years of my treatment for MS is Tysabri (natalizumab). It worked well, holding the progression of my MS at bay for the several years that I received the infusions. I’d probably still be on it today, were it not for the possibility of PML.

Progressive multifocal leukoencephalopathy (PML) is a rare brain infection that usually leads to severe disability or death. Most adults are already infected with a virus called the John Cunningham (JC) virus, which is usually acquired in childhood.People who carry the JC virusare susceptible to PML, but most don’t develop it. However, Tysabri and some other therapies that suppress the immune system are known to increase the risk of PML for those who are JCV-positive after a certain period.

I’m positive for the virus (JCV+). Even so, my neurologist, believing that the PML risk is low at the time a patient begins Tysabri infusions, prescribed the treatment for me. After two years, however, she reduced my infusions from monthly, which is the standard treatment, to every other month. That’s because studies indicated that the PML risk begins to increase after two years of Tysabri infusions.

Longer gaps between infusions may lessen the risk

Now there’s a study that confirms the wisdom of my neurologist’s treatment modification. Researchers at theNew York University Langone MS Comprehensive Care Center report that extending the length of time between doses of Tysabri from every four weeks to every five to 12 weeks “significantly reduced the risk of developing” PML. This Langone study didn’t look at whether reducing the treatment frequency impacted the effectiveness of the therapy. However,previous work by the same researchers found that extending the dose up to eight weeks did not negatively affect the medication’s efficacy.

The Langone study’s primary author,Lana Zhovtis Ryerson, MD, considers this a potential treatment changer. “Our safety findings are clinically and statistically significant, and we believe that extending the dosing schedule of natalizumab is practice changing and may save lives,” Ryerson says.

That’s good news for patients who may have ignored a useful MS DMT because of its PML risk. And it proves to me that my neuro knows her stuff.

You’re invited to follow my personal blog at www.themswire.com.

***

Note:Multiple Sclerosis News Todayis 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 ofMultiple Sclerosis News Todayor its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

MS Update: Good News for Tysabri Users Who Are JCV Positive (8)

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.

Tags

#ACTRIMS2018, Biogen, JCV, John Cunningham virus, PML, progressive multifocal leukoencephalopathy, Tysabri (natalizumab)

Comments

MS Update: Good News for Tysabri Users Who Are JCV Positive (9)

Heracles

How much is Lana Zhovtis Ryerson, MD receiving in total compensation from Biogen??

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (10)

Becca

I'm doing the 8-week infusions, too. I've gone 6 months with this schedule, and so far so good. I haven't found anything (rebif, copaxone, tecfidera, etc) to work near as well as tysabri so this is welcome news!

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (11)

Mayvår Sjøberg

I reacted to the first dose, so we pushed time between doses to 6 weeks and infused over two hours with IV fluids prior (and pre-meds). I've been fine since. I'm glad to have a neurologist like mine!

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (12)

Cynthia

I was on Tysabri for 6 years and was JCV positive. I went monthly up until June 1, 2018. My numbers from the blood work was good that test for the JCV. He told me that I had to stop because the FDA stated that I have gone past the required doses (72). The medicine was working for me really good. I cried because he placed me on a drug that I did not like because it smelled like marijuana every time I broke the seal. so now I am not on anything because I am JCV Positive.

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (13)

Ed Tobias

Hi Cynthia,

There are about 15 disease-modifying therapies available in the US. For most of them being JCV positive isn't a concern. Have you asked your neurologist about any others?

Ed

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (14)

Helen Wilk

Been on tysabri for 9 yrs and no one ever mentioned a dose limit.

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (15)

NIQUE

If I have to go extend the days before I get my next infusion, I would be disheartened. A week and a few dsys before my next treatment my symptoms are extremely worse.

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (16)

Ed Tobias

Hi Nique,

You're not alone. I've heard of many people who feel poorly just before they're due for their next Tysabri infusion. Fortunately, I didn't have that problem so extending the time between infusions didn't bother me. Eventually, however, my JCV titer score rose to a level where I needed to switch to a different DMT.

Ed

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (17)

Shannan

Did you change to Ocrevus? I have been on Tysabri 12 years and my JCV titer indicates I should switch, but I've read so many concerning comments about that drug.

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (18)

Ed Tobias

Hi Shannan,

After Tysabri I went to Aubagio. For financial reasons I later changed to Lemtrada, and have finished two rounds of that med. Aubagio worked well for me. I think that Lemtrada has worked even better.

I've heard good things about the effectiveness of Ocrevus but I don't have any personal experience with it. Keep in mind that all of our medications carry some risk. You and your neurologist have to balance out the potential reward compared with the possible risk.

Keep in mind of the "concerning comments" you've read come from Facebook groups it's generally the case that more people take the time to write complaints than those who take the time to write positive posts.

Good luck,

Ed

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (19)

Donna Carpentier

Can I ask you how high your number of jcv was at?

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (20)

Ed Tobias

Donna,

I was on Tysabri many years ago and I don't remember my titer score. Sorry.

Ed

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (21)

kristen

Hi Nique,
I have been taking tysabri for 2 years now. I found that when I am given more fluids it makes getting to the next infusion like a ordinary day. no more counting the days from 21-28.
Ask for more fluids

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (22)

Cjp

Great feedback for I’m the one giving tysabri. RN infusion

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (23)

Vanessa

Was on tysabri for 6 years before becoming jc positive at a 3.8 score. Switched to ocrevus and had 2 relapses in a year. I want back on tysabri, new score came back at 1.15. Scared but I need my quality of life to go back to what is was while I was on tysabri. Ocrevus has the same reduced disability progression, but does not mask symptoms. I'm on 4 new meds with these 2 relapses and wish I chose to space the infusions out vs jumping ship altogether.

Reply

MS Update: Good News for Tysabri Users Who Are JCV Positive (24)

Ed Tobias

Hi Vanessa,

Thanks for the information. DMTs treat us all differently. I'm glad that Tysabri works well for you and I hope you're able to continue with it. If you can't there are many other treatments you can discuss with your neuro.

Good luck,

Ed

Reply

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MS Update: Good News for Tysabri Users Who Are JCV Positive (2024)
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