Multiple Sclerosis Vlog: Decoding the JC Virus Antibody Test
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- Опубліковано 4 жов 2024
- What's your PML risk? In this video I teach you how to understand the JC virus antibody test. To learn how to decode JCV antibody testing, start watching this video!
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NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help education others. These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a 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 or seen in any of our videos. They are just to help educate you about the condition guys!
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Thank you so much for this information! I have been on Tysabri for more than 14 years with a titre level ranging from 3.125 - 3.75. Many doctors have become uncomfortable keeping me on Tysabri and refused to allow me to remain on it and so I've moved on to a different Neurologist. There is no bigger stress than having to constantly battle to remain on a treatment that has allowed me to forget I even have MS for 14 years. No relapses, no progression, nothing. I understand the risk and we mitigate it with MRIs every 3 months and infusions every 7 weeks, That's a comfort in itself to me, and if I notice the slightest change I would immediately contact my Neurologist. Thanks again!
14 years is wild. I have been on tysabri for 3,5 years and my tests turned positive last week with 0,69 index value. My doctor told me we can go as far as 1,5 but i cannot go on after it reaches 1. The moment it reaches 1 i will go on with ocrevus.
I'm JC positive and on Tysabri but so far I'm doing great!
Hi,i am positive, the level is .58 what about yours?what level of jc?how long on tysabri?me 13 months
@@andyzabb1855 are you both doing good? I hope you’re
Glad to hear that❤ im new to ms and im positive as well
I’m JC+. My antibodies started at .32 in August ‘22, then .27 in November ‘22, and most recently .26 in February ‘23. I’m trending in the right direction!! -just trying to figure out how or why.
I have had MS almost 15 years and I am positive for the virus. My neurologist is recommending tysabri. Thanks for the info
Thank you. I'm on Tecfidera with a high titre so I was warned when I was diagnosed and looking into drug treatments that I had slightly higher risk of PML on certain medications. But I was also made well aware I'd be checked every three months and that it'd be tested everytime there was a relapse. I did have that panic at first, I went looked up the horrible things it does, and then rationalised it as well as I could that it was a tiny chance, the potential risk Vs reward makes it worth it. But I completely understand why people aren't willing and worry.
Mmmmmm, ☕️where’s my cup of coffee?! That was a great ending to another great video, thanks!
Great explanation, Dr. Boster! Thank you! I still think of PML risk as binary. Even though the risk of getting PML is 1% or less, it is 100% of PML for the person who gets it. The fact of low statistical likelyhood of PML does not matter at that point.. :(
This! My aunt got PML and died in 3 days. It seems like the MS community views PML as a distant boogeyman, not a tangible risk☹️ definetly a big concern for me having seen it first-hand
Sunday morning coffee with Dr. Aaron Boster 👍
Excellent video. Many of our Warriors ask about this ❤️ sharing
Very informative, you got 👌 👌
Dr Aaron,
I watch all your videos which are very informative, even here in the UK.
I have been on Tysarbri for 18 months, the first 12 every 4 weeks then every 6 weeks
My titre level is 4.77 and have been taken off Tysarbri and will be starting Ocrevus hopefully within the next 2 weeks here in the UK
Thanks again Doc👌
How are you doing so far David? Did you have any Tysabri exit strategy?;
ABSOLUTELY POSITIVELY BRILLIANT VLOG Dr Boster. So many people scared of this. Ty for enlightening us. 😉👌🏼 Hella fire ending 💯😎
TY Matt! #WeHaveMS
Kudos for showing the best way to make coffee! :)
QOTD: for you personally, is a brain infection risk of 1% unacceptably too high? What about a brain infection risk of 100th of a percent (0.01%)?
Dr.Aaron,
I wanted to say I'm very glad u asked this for when i was on tysabri. my old dr. And I, Ended up making me sicker at the time. Due to the .%fear to decide n time passing.N now im stuck in no DMT land #thats not my choice.
~ in respects to tysabri; when ur newly dignosised. Especially.
& your at the point of choosing the [ 💉infusion] Tysabri.
It appears to be so scary.
& when the dr. Is worried it makes the patient worry!
~There's a huge difference in how
Dr. B presents this and many drs.also do now Compaired to years ago. And the great fears that would shy us away,i hope now OLD FEARS are nonexsist and that theres 👎no disassociation with tysabri and the truth, to the risks. As displayed here in this 📹 video.as i found it with a very important purpose.
~i know for me It took me two long years. To decide_this.
N this is beyond telling because im that patient that . Would always side with a drs best judgment.
~I truely want to drill in the point here. We let me get sicker because of lack of information... OR A DISSASOCIATION of how to precieve it.And maybe then it was different;for times were.
~That if it was described the way u do in clinic. Or in this video then. I would have maybe worried a week.
For the precautions that are taken are. Very thorough.
Also in closing i want to share the old convos.multiple neros had with me...
for it was always said that the patient would die. That it would be unrecoverable damage.. That in 3weeks i would be no longer living. Or if i was lucky in a coma for the rest of my life.
I understand thats not always the case now.
But then drs told a horror story. For maybe it was a different time for tysabri as just came on the market.
For now its said that theres at least a type of option to save a life. In the rare chance a patient arrives at this dignosis.
I jusst wanted to share that. Even though the past seems so scary.
For. I find tysabri now as an
Drug to give back a life not to take it.as a beaken of light in this disease..
For i had decided even then my life was worth the risk.i was willing to take the chance.for a chance at life was what i was fighting for.n i believed only tysabri could grant me that. For it was the best option then.n im my opinion is still life changing. Medicine.
Even without it now it recovered a stability in my legs. Im still better after tysabri.
Sincerely
Divine
P.s. of course i pick. The percentage. As i know my life now. N id pick tysabri in a heartbeat again. Instant ...with the baby risk of 100th. Of percent But i do get the fear 😱
Aaron Boster MD. You have taught us about the importance of Disease Modifying Therapies. The risk of 1.0%, after 6 years of treatment (do I have that correct?) feels acceptable odds.
I’m on Tysabri now and I love it. I think that the fact that it makes me feel better makes the risk worth it. I’m JC negative right now and just had blood drawn on Friday for my JC test. I will say though that any percentage other than 0% is too much a risk for my family and loved ones and I should take that into consideration. We don’t get MS alone. If you got MS, your family has it too.
Great topic covered on a commonly asked question! Always good information,Dr B!!
Awai Ebi Thank-you for sharing your experience and thoughts.
I chose not to start tysabri because I tested positive for jc. There are other options for me and I'm not a risk taker. If I had tried everything else and i thought tysabri was going to make a major difference in my MS , i might consider it but thankfully I'm not at that point. Thanks for the info! P.s.i LOVE my French press! I could almost smell your coffee through the screen!!! ☕
So what did you take instead
Wonderfully put, very easy to understand and greatly appreciated Dr. Boster! As always thank you for taking the time to teach us!! EVERYONE REMEMBER TO THUMBS UP AND SUBSCRIBED! Dr. Boster is awesome, kind, and will teach you so many things!!
Thank you so much for the support! #Respect
@@AaronBosterMD Always!! #Dr.BosterRocks!
I was recently pulled off my tysabri after being on it for 11 years. My latest jc tieter was 5.77 my docs never saw anyone this high before. Im beginning a new drug now because of it. Tysabri was kerping everything at bay. Now I'm concerned. I feel like my body is playing russin roulette with itself.
How are you doing now? Are you okay
I agree. The titer range can be overwhelming. Broken down like this is helpful. Even with a high titer the risk is minimal. Risk vs reward?
But look at the risk/chances of having ms. And it still happened. And the chances of winning the lottery are less than the risk of pml, yet we still all buy lottery tickets….
Thanks doc! I've been on for 2.5 years and jumped from .07 to .77 but still negative. So confusing, but this helped!
negative means negative and the optic density (optic density think level or unit of measure) has NO MEANING. So negative you can IGNORE that number as it don't mean anything.
Thank you for the information doctor. It's almost perfect timing because I just actually went for my blood work on Thursday the pre-screening blood work for my tysabri infusion injections. I am on the road to recovery but my muscle spasms are still happening frequently the baclofen doesn't seem to be working as good as it did the first week I took it. I was only taking 10 mg tablets three times a day now I'm up to 20 mg tablet so we'll see how that works within the next few days. Spasms were not bad just very awkward and uncomfortable that they would happen and it would only happen for 10 to 15 seconds at a time but it really hindered my walking from couch to bathroom because I would lose all control of my left leg and left arm.
Very interesting 👍
Doc.....your live stream isn’t coming thru...maybe reboot your computer? Or slap it...whichever works 🤣🤣
Thank you for the information Dr. Boster!!!
When I asked about tysabri I was told it was used only when other drugs had failed
I was started on Tysabri as a first option, so this is strange to me. I see your comment is 4yrs old, so maybe the rules have changed? My insurance wasn’t happy about covering it, but after seeing my MRIs, they conceded.
Just LOVE your presentations! THANKS so much for ALL your works
You are so welcome!
Another excellent educational video, that is easy to understand. I am on Tysabri so this is very relevant to me. Thank you so much for your explanation. I feel so much better and reassured about the risk, after your explanation. Those numbers are an acceptable risk for me. Wishing you a wonderful week ahead.
Dr. Aaron,🤓
Thank you so much for speaking of this. I always wanted to know more of it. In an educational way.
I appriciate the way u break things down.
Sincerely
Divine🐻👣
P.s.
Absolutly loving the coffee experence. Mine slightly more confusing. ☕
yay. :)
i actually had to re subscribe in the hopes my comments would appear. :(
Thxu
Divine
TY Divine!
@@AaronBosterMD 🤗
Dr. Boster, thank you for the information on JCV. I was on Imuran for a very short time by my Rheumatolgist (maybe one month) prior to actual diagnosis of MS. She felt I had TM and maybe MS but wanted to get me on something in the interim of me getting in to Barrow’s. Just trying to slow things up do to rapid onset and me being caregiver to my mom, who also had MS. With being on Imuran for such a short time, would this effect the way of looking at this chart? You have mentioned in the past about MS meds taking a little time to be effective, so I wonder if the same with this type of medication. After diagnosis, I was placed on Aubagio and then Tysabri. Was negative at first, put went positive within 6 months with low number and the after another 6 months it what she said was on the lower side of high and she wanted me to come off due to her concerns. Been on Ocrevus for almost two years now. Lastly, my Neuro doesn’t retest of JCV, said once you have it, you have it. I understand that but could the numbers not continue to increase? Just curious. Appreciate your time.
amazing thank you
EXCELLENT explanation! Thank you. And...I’ll be right over for some French pressed coffee! Do you have 1/2 & 1/2, or should I bring it with me? ☕️
+Megan D only 2% milk and soy milk, sorry!
ne vue magnifique!
Oh meg. I felt so bad. As i slirped the very last drop. Of the perfectly pressed coffee...
MHMMM.. IT was soo yummy...
Meg. Im sooolo soooooo very verry sooooorry... To tell u but i drank it alll..it sure was delectiable...
U see u i had used all my spoons. And was all out. And sure in a bind.. Until
Tada
#Dadada....boster coffee...
It. Even has magic.... It comes with milk... Will
Since its pretend u can have half & half. Lol.
Ps i think boster should bring his french press to clinic and at least grant us with an expresso shot. At the end of appointments. As a reward for completing
M.s. Olympics.
-divine. 🤗🐻🌠🐾
2% milk or soy milk Dr. Boster???? Yuk!!! 😣 I'm with Megan D....1/2 & 1/2 for me too! BTW, do you have any coffee left? 😉
that was an excellent outro - very nice :)
info also as always, fantastic! -
I do wonder about the negative - indeterminate fluctuations that happen in antibody indicator - (especially when we are negative and it seems to jump around a bit)
same with the levels - do we know why they 'jump around' so much?
at the start of tysabri, somebody's index value was at 0.12 and then 2 years later they are at 0.27 (still negative or indeterminate to antibody)?
You need to update your chart with % symbols or text. People can misinterpret those numbers and be off by two orders of magnitude.
You're right, the numbers I share are percentages. 0.02 means 0.02% or 2 hundredths of a percent. Thank you for the important call out.
Good explanation. Can you do a table for Tecfidera.
Thank you for such an educational and informative video! I do have one question regarding this subject and I can't seem to get an answer from my neuro. Because I'm on Tecfidera and JCV+, I've asked if I can get another test to check my titer. My neuro's response is "eh, that isn't needed because we know you're positive." What wording or language should I use with my neuro to make her understand how important this test is to me?
Thank you again for sharing your knowledge, wisdom, and insights with us!
Loved your video Dr. Boster. I am JC virus positive which I have been for many years. But my question is how do we even catch the JC virus?
You can catch it from stepping outside. Meds like tysabri, one is tested every 3 months for jcv, but u could catch it the second u leave the blood test!
Answer to your QOTD: A brain infection risk of 1% is worth it to me. MS scares me way more. Sometimes I think doctors are more afraid of that 1% risk than patients, lol! Great video! I think I'm going to have to try out that french press! It looks pretty easy to make! I like my coffee iced though :) Thanks Dr. B for your time!
Erm, the risk of pml varied depending on the individuals titre of jcv
Was curious if how high your JCV test shows greater than 1.5 matters or not? Thanks for the video!
Dr Boster, can you tell me what restricted diffusion on two lesions in the pons and consistent with active demyelination would mean? I’ve had MS for 15 years and know some of the radiology terminology is a science but I haven’t seen the term “restricted diffusion” on my MRI before.
What are you making your coffee with? I've never seen one of those. Also, I love your mug; it looks like marble.
Kalie Scanlan it’s a French press, makes excellent, strong coffee☕️
Well explained. Thanks, and happy Jerusalem Day. 🇮🇱
McLaughlin View
What's your view about off the chart JC Virus antibodies and Gilenya?
All DMTs have risks/side effects that require open-eyed discussions. Thank you for simplifying one of them.
Each year about 1759 foul balls fly into the fans in the MLB, that means out of every 2 out of 3 games your head is at risk. Yet folks go...Why? Because they are willing to take the risk if it means that they can continue to do what they enjoy in life.
One needs to ask themself: What is the my risk that MS will continue to attack my CNS if I don’t have a Disease Modifying Plan compared to if I do?
What about tecfidera ?
Thank you Dr Aaron for the video and the explanation... I am positive to JC virus with no prior imunosupressions. So I ve been suggested to start Gylenia. I know there is a risk with Gylenia as well but Is the risk lower and how can we monitor the risk over time ? Thank you.
Can you tell me the treatment regularity for the chart you use. I believe the incident of PML with a four weekly treatment is higher than with a 6 weekly treatment. Locally New Zealand there have been no recorded cases of PML with a 6 weekly treatment rotation. However NZ has small population.
can an MS patient with positive anti body to the JC virus get HSCT treatment?
What about gilenya as far as PML Dr?
Mine was 3.6
What if youre still being tested to see if you have M.S and have never been exposed to chemotherapy or immune suppression medications, but test positive with 3.06. Should i be worried?
What's the risk of infection when on gilenya if you are negative or positive?
How often do you test your Ocrevus patients for this virus if they had a negative result the first time? Thanks!
Tysbari 3+ years still JC negative !
Dear Ms. CLHiggins.,
👋GOOD EVENING,
just divine here...
Wow. Your one impressive lady i must say....
~I know sometimes. Getting infusions can be difficult.especially when one lives far away. Or M.S. or side.effects in general can get in the way.
N i do believe 3 years is a great start....
Keep up the great work:).
Cheers.. From divine.
As u are now are part of my Inspirations..
Sincerely,
Cynthia.
🤗4.🐻4.🤝4.
*DIVINE*
What if someone's urine sample has detected JC virus dna?
A question that you can maybe tackle in an upcoming video: is MS on the rise? I heard that it is, but couldn’t find any evidence.
vid coming out soon (already made and in the cue!)
Holas Dr. B. Thank you for your videos. I’m always eager to learn all things MS.
When I was first diagnosed with MS almost 5 years ago, my neurologist wanted to start me on Tysabri. But I tested positive for the JC virus (no prior immunosuppressions) so he put me on Tecfidera instead.
But I know Tecfidera also carries a risk of developing PML. Is the risk for developing PML while on Tecfidera higher or lower than if one was on Tysabri?
much lower
Aaron Boster MD Thank you so much Dr. B. That’s good to know.
I was on aubagio for 2 months does that change my situation for me about to take tecfidera?
How do we find out how to assess our risk if JCV+ and starting Ocrevus ?
Hi Dr. My fiancee has just come off of Tysabri. I was just wondering if there are any possible withdrawal symptoms linked with those who cease Tysabri?
What if I had lemtrada in October 2021 ,am underweight 44 kg 1.7 m and am positive for the virus antibodies?
Thank you for all the info
If you were tested for JC Virus and came back positive with high titer of 3.58 is this considered extremely high?
Due to this reading tysabri has been ruled out as a treatment for me, so I am starting on ocrevus this month, do I carry a high risk for pml on ocrevus?
I'm right where you are at titer numbers and can't figure out what my risk is? I chose to change to ocrevous after almost 7 years on tysabri.
🙋🏻♀️ New MS diagnosed!! Love your videos!!
JC Virus antibody positive, 0.45
No previous treatments. What about Ocrevus?
Thanks much for your videos!!! Soooo informative!!
@@MSVlogSupport how do you compare tysabri vs ocrevus?
Kay Summit
Resharing
So....is there a titre level that is just too high to consider starting Tysabri? If a patient were at 4.04 to begin with but not been on any immunosuppressants, should they just consider a different medication? It seems high risk falls over 1.5....so I can only assume a 4.04 level to start is bad news.
I started as 1.26 then went to 2.something (can’t remember - MSemory) then suddenly rocketed up to 4.06 and I was whipped off Tysabri super quick with my neurologist at the time being somewhat alarmed. That made me sad, I loved Ty.
The risk of pml goes from 1 in 100,000 if jcv negative to 1 in 1000 if positive. We buy lottery tickets with less chance x
Does the chance of PML stop once you stop Tysabri ??
Does the JC Virus have symptoms when you are initially exposed?
No
my jcv antibody test is positive and the level is 3.17 n i am worried.
I have been on dimethyl fumerate for 3.5 years but due to relapse my doctor prescribed me tysabri.
i am worried and i am not able to decide whether to go for tysabri or not please help sir.
thankyou
What did you do finally?
Robinson Frank Jackson Scott Thomas Ronald
I understand how someone can be JCV negative or positive, but I often see a question posed on my support group asking about testing for the antibodies to the drug Tysabri itself. Is that something that happens?
+Darla yes. It unrelated to a risk of PML. It’s checking for neutralizing antibodies you body has made that can turn OFF tysabris benefitial effect
Aaron Boster MD that’s good information to know. Thank you.
YW!