Thanks for another great video! I've been on Tysabri for 5 years, am stillJCV negative and am 55 years old. My neurologist switched me to every 6 weeks for my infusions, mostly because of my age and I don't feel any negative symptoms thankfully. I really appreciate the information about how to stop Tysabri and switch to a different dmt, to avoid rebound. I was never informed of the rebound effect when I started Tysabri and I don't think I would have started it, had I known that was a possibility upon stopping it.
Great video Dr. B! I was diagnosed last year and initially JC Ab negative (0.2), so my doc started me on Tysabri. I requested 6 week intervals for convenience and to reduce my risk of PML (after doing my own research). After 3 doses I became JC Ab positive (1.24) and I believe my initial result was a false negative (no way to know for sure unfortunately). I'm now on Ocrevus, as recommended by my neurologist, and just received my first full 600mg dose 10 weeks after my last Tysabri infusion. I'm hoping not to experience the rebound relapse, but I'm glad to see that switching to b-cell depleters seems to be the best move. Thanks again for keeping the MS community well informed!
I have a severe and very active form of MS and I'm on Tysabri for 7 months now. The difference is spectacular and this infusion helped me to go back to work and even be active at all because I was almost at a bed ridden state. I walk and function normally even if my cerebellum was heavily affected during my relaps last October. Sometimes you need to take a risk but my hospital team is regularly monitoringe me in regards to JC virus and Tysabri antibodies. Greets from Paris
It is pretty amazing for sure! I’ve been on for a while now and every year I get better and stronger. I also have a pretty severe form and I was in pretty bad shape when I started. It’s weird though when muscles turn back on and your brain starts working better.
As always great video thank you for all you do. As a 57-year-old male (at the time) and JC positive my doctor wanted to put me on Tysabri. He was okay with the PML risk the problem is it was my risk I was not. After speaking with a few neurologists , I opted for a different treatment. I am on Ocrevus with many lifestyle and dietary changes
I am on tysabri. I was made aware of the pml risk. I didn't care. I was barely living so to me if tysabri gave me a couple good yrs it was worth it. Will be 2 yrs in Jan being on it. Still JC negative. I will stay on tysabri as long as possible
@@DrBrandonBeaber that is very true! Before ms I was on no meds. I used lifestyle changes. Now with ms, my quality of life is poor so I would do just about anything to get my life back (without hurting/killing anyone of course lol) Thanks for this video!! 😁
Good afternoon Dr Brandon, I just caught this just now, I'm sorry I wasn't able to tune in this morning but it's funny you're a subject is tysabri this week because I just hit the three year mark and thank goodness no JC virus positive up to this point, knock on wood. Thanks for another informative video sir and have a great day.
Love this video one of the best explained from any doctor I’ve ever heard after meeting with several doctors after being JC positive and it seemed not one doctor could explain what to do, or the best medication to get on if I were to change. So thank you very much .🧡😊
I’m in the process now of decided to continue Tysabri at EID or move to Ocrevus. JCV 3.66. Both are scary, not sure what to do yet but this was helpful. Thank you
Wow, excellent video, thank you as always! I'd love to see a similar pml risk video highlighting Tecfidera, as well as other dmt's that have pml as a risk. Pretty please? :)
Thank you for giving of your time to educate us. How often and how do you monitor for PML while on Tysabri? My neuro will order MRI's every 6 months but not too interested in repeating blood work that often
Generally speaking, I would check the JC virus antibody every 6 months. For someone with a 10,000:1 risk of PML, I'm not sure having an MRI every 6 months is a practical approach. The probability of finding a brain tumor in a random person on the street with no symptoms is probably significantly greater than 1 in 10,000.
@@DrBrandonBeaber thank you! I’d rather do a blood test than an MRI every six months too although at 60 and diagnosed just lest year I want to stay on top of everything too!
Hello doctor Brandon, I am writing from Turkey, I follow you and thank you for your work. I am a 35-year-old female patient. I have had MS since 2015. I have no disability, but I have 7 lesions in my brain and a lesion in the spinal cord. I have been taking Tysabri for three months. JVC is positive and 4.13 doctors here are still continuing. Do you think my PML risk is too high? I'm really curious about your comments on this subject. I would be very happy if you answer.
As far as I know, there have not been reported cases of PML in people with MS taking rituximab. there are two reported cases of people getting PML with the similar drug ocrevus (not counting "carry-over" PML risk in people who previously took tysabri). The risk of PML with rituximab in other conditions such as rheumatoid arthritis has been reported to be approximately 1 in 25,000.
The centre where I get my Tysabri wants me to change to subcutaneous delivery. Also I have had multiple ill defined new cerebral white matter and brain stain lesions so not sure it is working for me anyhow.
Great video as always especially as someone on Tysabri (and JC negative) You mention B cell depleters as a great switch to prevent relapses what about IRT (mavenclad\Lemtrada?) When discontinuing Tysabri?
I think mavenclad/Lemtrada would likely also be effective in preventing post-tysabri rebound (which I will have a video on next Wednesday) if initiated soon after stopping tysabri.
Thank you so much for all the information Dr. I have been in Tysabry almost 2 years and have done wonder for me. I always think it would be better if I didn’t have to take any drug but such it’s life 🧡🎗I recently gone from the IV to the injections which it’s easier. Have a lovely day. Mónica
Good morning, I’m 35, 82 pounds, 3 kids, never took immune suppressants (with the exception of the steroids IV for flares), JC+ 0.27, started Ty yesterday as in my 13y with MS I’ve already tried interferons and Copaxone but I recently discovered I have many lesions and on top of this the last 2 years I had many relapses (5 times ON, twice bilaterally). I thought Ty was going to be the most effective but PML scares me a lot as I’m already JCV+ and we all know there is no cure for PML once it starts. Do you think can be considered safe enough for the first 2 years for me? I’m scheduled to do Ty every 4 weeks, 350mg if I’m not wrong. Thank you
![Multiple Sclerosis "Rebound" [After Stopping Medication]](http://i.ytimg.com/vi/1kZjB0kuuZY/mqdefault.jpg)
![Multiple Sclerosis "Rebound" [After Stopping Medication]](/img/tr.png)
Thanks for another great video! I've been on Tysabri for 5 years, am stillJCV negative and am 55 years old. My neurologist switched me to every 6 weeks for my infusions, mostly because of my age and I don't feel any negative symptoms thankfully. I really appreciate the information about how to stop Tysabri and switch to a different dmt, to avoid rebound. I was never informed of the rebound effect when I started Tysabri and I don't think I would have started it, had I known that was a possibility upon stopping it.
Great video Dr. B! I was diagnosed last year and initially JC Ab negative (0.2), so my doc started me on Tysabri. I requested 6 week intervals for convenience and to reduce my risk of PML (after doing my own research). After 3 doses I became JC Ab positive (1.24) and I believe my initial result was a false negative (no way to know for sure unfortunately). I'm now on Ocrevus, as recommended by my neurologist, and just received my first full 600mg dose 10 weeks after my last Tysabri infusion. I'm hoping not to experience the rebound relapse, but I'm glad to see that switching to b-cell depleters seems to be the best move. Thanks again for keeping the MS community well informed!
I have a severe and very active form of MS and I'm on Tysabri for 7 months now. The difference is spectacular and this infusion helped me to go back to work and even be active at all because I was almost at a bed ridden state. I walk and function normally even if my cerebellum was heavily affected during my relaps last October. Sometimes you need to take a risk but my hospital team is regularly monitoringe me in regards to JC virus and Tysabri antibodies. Greets from Paris
It is pretty amazing for sure! I’ve been on for a while now and every year I get better and stronger. I also have a pretty severe form and I was in pretty bad shape when I started. It’s weird though when muscles turn back on and your brain starts working better.
Thank you! I prefer MS to PML 😀 The risk is very low... But when it happens to you, it's 100%
The Risk of ms was also very low but you got it!
@@TankoxD Yep! I had ZERO risk factors currently outlined by medical community. I got one factor that is viciously denied as being a risk. 😀
As always great video thank you for all you do. As a 57-year-old male (at the time) and JC positive my doctor wanted to put me on Tysabri. He was okay with the PML risk the problem is it was my risk I was not. After speaking with a few neurologists , I opted for a different treatment. I am on Ocrevus with many lifestyle and dietary changes
Thanks for sharing. Everyone has a different risk tolerance with PML to be sure.
I am on tysabri. I was made aware of the pml risk. I didn't care. I was barely living so to me if tysabri gave me a couple good yrs it was worth it. Will be 2 yrs in Jan being on it.
Still JC negative. I will stay on tysabri as long as possible
Thanks for sharing Donna. Research has actually shown that people with MS are willing to tolerate a greater risk of MS than doctors.
Same here! Totally agree
@@DrBrandonBeaber that is very true! Before ms I was on no meds. I used lifestyle changes. Now with ms, my quality of life is poor so I would do just about anything to get my life back (without hurting/killing anyone of course lol)
Thanks for this video!! 😁
Jay the Florida pool pump motor repair guy. Longwood approved ! that was good info 2 know 👨🔧Dr.Brandon Beaber
I was on it for years until I changed insurance companies. I felt the best while on it. I was taking it every other month.
Did you experience any worsening ("rebound") after stopping it? What medication did you change to?
Thanks for this interesting beneficial information about tysabri
Excellent video Dr Beaber- thank you!
Thank you for yet another video that is broken down, and easy to understand! Such great content!
Thanks.
Good afternoon Dr Brandon, I just caught this just now, I'm sorry I wasn't able to tune in this morning but it's funny you're a subject is tysabri this week because I just hit the three year mark and thank goodness no JC virus positive up to this point, knock on wood. Thanks for another informative video sir and have a great day.
Love this video one of the best explained from any doctor I’ve ever heard after meeting with several doctors after being JC positive and it seemed not one doctor could explain what to do, or the best medication to get on if I were to change.
So thank you very much .🧡😊
I'm glad it was helpful
I’m in the process now of decided to continue Tysabri at EID or move to Ocrevus. JCV 3.66. Both are scary, not sure what to do yet but this was helpful. Thank you
I’d love a video about the new warning about colitis for Ocrevus!
Thanks for the suggestion. I'll make a note of it.
Thanks again dr B, interested on your thoughts on extended dosing intervals for Ocrevus, from 6 out to 9 months
I may do a video on this at some point. It is certainly an appealing strategy to prevent hypogammaglobulinemia (low immunoglobins).
Wow, excellent video, thank you as always! I'd love to see a similar pml risk video highlighting Tecfidera, as well as other dmt's that have pml as a risk. Pretty please? :)
Thanks for the suggestion. The risk is extremely low for all disease modifying therapies other than tysabri.
my questions would be 6:31
how many JCV negative patients got PML? were do they tested correctly? in my opinion that 1/5000 is quite too much
Thank you for giving of your time to educate us. How often and how do you monitor for PML while on Tysabri? My neuro will order MRI's every 6 months but not too interested in repeating blood work that often
Generally speaking, I would check the JC virus antibody every 6 months. For someone with a 10,000:1 risk of PML, I'm not sure having an MRI every 6 months is a practical approach. The probability of finding a brain tumor in a random person on the street with no symptoms is probably significantly greater than 1 in 10,000.
@@DrBrandonBeaber thank you! I’d rather do a blood test than an MRI every six months too although at 60 and diagnosed just lest year I want to stay on top of everything too!
Hello doctor Brandon, I am writing from Turkey, I follow you and thank you for your work. I am a 35-year-old female patient. I have had MS since 2015. I have no disability, but I have 7 lesions in my brain and a lesion in the spinal cord. I have been taking Tysabri for three months. JVC is positive and 4.13 doctors here are still continuing. Do you think my PML risk is too high? I'm really curious about your comments on this subject. I would be very happy if you answer.
Great info as usual!! Could you please do a video of PML risk in JC Virus in regards to Retuximab in depth?
As far as I know, there have not been reported cases of PML in people with MS taking rituximab. there are two reported cases of people getting PML with the similar drug ocrevus (not counting "carry-over" PML risk in people who previously took tysabri). The risk of PML with rituximab in other conditions such as rheumatoid arthritis has been reported to be approximately 1 in 25,000.
Thanks for all that you do!! It's much appreciated!!
The centre where I get my Tysabri wants me to change to subcutaneous delivery. Also I have had multiple ill defined new cerebral white matter and brain stain lesions so not sure it is working for me anyhow.
Oh gosh.. I didn't even know subcutaneous was an option! Would you give it yourself?
No you still need to attend and they have to monitor you for a wee while just like after the infusion but it is much quicker
Great video as always especially as someone on Tysabri (and JC negative)
You mention B cell depleters as a great switch to prevent relapses what about IRT (mavenclad\Lemtrada?) When discontinuing Tysabri?
I think mavenclad/Lemtrada would likely also be effective in preventing post-tysabri rebound (which I will have a video on next Wednesday) if initiated soon after stopping tysabri.
Good information 👍
Thanks. Video next Wednesday is about post DMT rebound.
Thanks Dr, JC Virus test came positive & My Dr was not willing to take the Risk after Corona, 700+ Diedemer score, Oxygen, ICU etc 😥
Generally speaking, tysabri is not thought to significantly increase the risk of covid.
I think mono is how I got MS or. LYMES DISEASE
I have a .48 for jcv and my neurologist said it’s very low so not really positive. What do you think?
Thank you so much for all the information Dr. I have been in Tysabry almost 2 years and have done wonder for me. I always think it would be better if I didn’t have to take any drug but such it’s life 🧡🎗I recently gone from the IV to the injections which it’s easier. Have a lovely day. Mónica
Is it safe to say that DMT's like Ocrevus are safer in terms of possible rebound if discontinued ?
thx !
Good morning,
I’m 35, 82 pounds, 3 kids, never took immune suppressants (with the exception of the steroids IV for flares), JC+ 0.27, started Ty yesterday as in my 13y with MS I’ve already tried interferons and Copaxone but I recently discovered I have many lesions and on top of this the last 2 years I had many relapses (5 times ON, twice bilaterally). I thought Ty was going to be the most effective but PML scares me a lot as I’m already JCV+ and we all know there is no cure for PML once it starts. Do you think can be considered safe enough for the first 2 years for me? I’m scheduled to do Ty every 4 weeks, 350mg if I’m not wrong.
Thank you
I meant 80kg
On TYSABRIE I could walk and drive on OCREVUES I lost my ability to walk and drive
I took tysabri for almost 2 years and have the JC virus and the doctor took me off of it because my number s went up