Hi from UK. I was on TYSABRI for four years and I was perfectly fine on it with no side effects at all. I went JC positive 3.4 which my consultant thought was alarmingly high so I stopped and I have just had my first 2 split doses of Ocrelizumab with no problems or side effects. Love you channel Dr B 😍
did you feel "sick" after the infusion? I Will get my first infusion soon, and everyone says they feel tired and sick for weeks, but maybe it's not for everybody
Good morning Doc! Though I'm positive I've been on Tysabri for almost a year. I fell n love with it immediately bc I felt better than I felt in years! Unfortunately I ended up hospitalized causing me to miss an infusion & I went right into an attack! It's taking it's time clearing out but I refuse to stop Tysabri! I'm keeping hope alive that it'll go back to last yeat so....
My 6 years experience with Tysabri was very good. Then I become JCV positive, stopped Tysabri and had more fatigue, problems walking, stifness. Would be glad to restart Tysabri even if every 2 months
Very informative video. Thank you so much. I’m starting Rituxan infusions on the 14th to treat RA and MS and I’ve received 2 types of JCV testing which were both negative. I was still nervous to start because of the PML risk but this video really helps my decision to continue to start it. Blessings and thank you!
My wife just had her first infusion after 5 years on rbif. 24 hours later she feels amazing. Doubt it would make that much of a difference so fast but ill take it
I loved Tysabri!! It gave me some energy back and stopped relapses in their tracks. I was taking Betaseron and relapsing 3-4 times a year. Neuro believes I’m still walking because of it but won’t let me go back on it because it altered my immune system? Taking Gilenya and it’s working well.
I have not been on Tysabri but I have heard wonderful feedback from those on it. I wish the infusions were less frequent. Though, when I get Ocrevus infusions the Tysabri folks are in and out much quicker!
Roche is testing an infusion time that is half as long, so only 2 hours. until now it looks like it doesn't have any side effects, so maybe in the next 1-2 years it will officially change to 2-3 hours :)
I absolutely LOVED Tysabri. I started with a positive 0.6 JCV. I found the dosing to be easy. After 16 years of shots (Copaxone), it was such a relief. I felt better than I had in years. I was ANGRY when I had to stop bc my JCV went up to 2.2 and I had to start Ocrevus. It ended up being okay, though. I like Ocrevus, and it has kept me able to get myself healthier overall. (weight down, fitness up). I would say, as a patient who was on Tysabri for 4+ years, it's a great DMT... until you have a scary and sudden increase in JCV! But then, you just go off of it, go through a wash-out (IV Solumedrol which wasn't "fun"), and then you can choose Ocrevus or Lemtrada. (Doc, why again did we NOT choose Lemtrada? I just found out my Health insurance will be gone on Jan 1st, 2021 (the company is "dissolving" the group and putting us on the open market, which may not be there or be affordable). I think I'd be less panicked bc I would have had my second dose by now, and felt some sense of long-term protection. What, again, was our reasoning?)
I was diagnose in may this year. My doctor believes ive had MS for at least three years. He out me on tysabri right off the bat. Loved it at first. In August ive got new symptoms that wont go away. Im still on the treatment though.
I have been on 5 DMD over the past 14 years. I was on Tysabri two different times for 2.5 years each time with a 2 year break in between. I came off since my titer increased significantly. I felt amazing on Tysabri and never developed new lesions while on it but developed new lesions on Rebif, Gilenya, and Tecfidera. I have been on Ocrevus for a year and no new lesions but feel absolutely terrible 6-8 weeks before my infusion and for 2 weeks after. In fact, no other drug made be feel as bad as Ocrevus has. I felt better during my relapses then I do while taking Ocrevus. Would love to go back on Tysabri but unfortunately I am not willing to take the risk considering my high titer and being on it for 5 years.
If you feel bad 6-8 weeks before the new infusion, it could be you that your B-cells grow back faster, and you can move your infusion 1 month up so it's every 5 months. talk about it with your neurologist :)
Hello Aaron, I've never taken tysabri but I am currently taking gilenya which unfortunately seems to be failing me. I have an MRI scheduled for this coming Tuesday, hopefully from there my practitioner and I we'll discuss tysabri. Fingers crossed brother.
Tysabri was by far the best DMT for me! I would go back if I could. Unfortunately I became JCV+ with a titer over 2. The word PML was scary. At that time I did not have a good understanding of the risk vs reward. Today with more knowledge I would have chosen to continue Tysabri.
I was on Tysabri for 6 and a half years. JCV index 2.7. Done my second dose of Lemtrada and feeling fine. Tysabri was a roller coaster but it was very effective. Lemtrada has other risks but I’m well monitored with blood work once a month.
It took me 2 months to recover from a sinus infection, longest i’ve ever taken to recover from an illness. Not sure if this is due to the immunosuppressant properties of tysabri
random question about tysabri and anemia - reading some literature as i go about investigating my recent major drop in hemoglobin after i had finally returned to a decent baseline after a surgery to fix what I thought was the culprit - Turns out there is some linkage between anemia and hemolytic anemia. Thoughts on this and, I really don't want to switch drugs but I also do not want to continue having to take iron :) Happy Halloween a bit Early! "The following adverse reactions have been identified during post approval use of TYSABRI. Because these reactions are reported voluntarily from a population of uncertain size, it is not always possible to reliably estimate their frequency or establish a causal relationship to drug exposure. Blood disorders: hemolytic anemia" (FDA)
How about starting tysabri and having other infections, such as the hpv virus with cervical dysplasia and having suffered from viral encephalitis at a young age?? Is it risky at all..?
Hi Shannon, JC VIRUS is etiologically associated with a fatal demyelinating disease known as PML... The high prevalence of JCV in urine and in sewage and the stability of the viral particles observed suggests that contaminated water, food, and fomites could be the vehicles of JCV transmission through the oral route. I hope this helps
He's already done one and talks often about it, but here is one Gillian. I will say this it's been the best decision I've made for my health. Highly effective medication. th-cam.com/video/e9IOwli-iNg/w-d-xo.html
There already is an alemtuzumab q&A? I've no doubt it's one of the most effective drugs they have. I've already had both rounds of infusions. It's the only drug so far reducing my relapse rate.
Dr. Boster, are you born with MS? What causes it to become active? For me, I went to bed and woke up with a numb shin, and it spread to my foot and then saddle numbness.
Have you ever considered using testosterone replacement therapy due to its neuro protective properties? Also I have heard that human growth hormone Can Potentially help with remyelination?
@@AaronBosterMD ah very cool. I just stumbled on your channel. Very useful information Dr. Boster. I'm goin to continue my testosterone replacement therapy and use HGH along with my tecfidera... hopefully it helps my situation. Thank you!
@@AaronBosterMD So what I mean is the message is clear on medications, and the JC virus and what to do if you're titers are high and how to approach it if they are.
Is tysabri the same as it was 12 years ago? It didn't agree with me then but will it work now? I was jaundice at that time on it. I was wondering if the same thing will happen again. My symptoms have become a lot worse. I am on another medication but I don't know if it's working.
Hi from UK. I was on TYSABRI for four years and I was perfectly fine on it with no side effects at all. I went JC positive 3.4 which my consultant thought was alarmingly high so I stopped and I have just had my first 2 split doses of Ocrelizumab with no problems or side effects. Love you channel Dr B 😍
did you feel "sick" after the infusion? I Will get my first infusion soon, and everyone says they feel tired and sick for weeks, but maybe it's not for everybody
Hi Dr B, love when you answer viewers questions! Thanks
Thank you kindly for answering my question :)
My pleasure! Thanks for asking it!
Good morning Doc! Though I'm positive I've been on Tysabri for almost a year. I fell n love with it immediately bc I felt better than I felt in years! Unfortunately I ended up hospitalized causing me to miss an infusion & I went right into an attack! It's taking it's time clearing out but I refuse to stop Tysabri! I'm keeping hope alive that it'll go back to last yeat so....
My 6 years experience with Tysabri was very good. Then I become JCV positive, stopped Tysabri and had more fatigue, problems walking, stifness. Would be glad to restart Tysabri even if every 2 months
See if you can get on Lemtrada. Go that route imo.
Very informative video. Thank you so much. I’m starting Rituxan infusions on the 14th to treat RA and MS and I’ve received 2 types of JCV testing which were both negative. I was still nervous to start because of the PML risk but this video really helps my decision to continue to start it. Blessings and thank you!
Best of luck 🤞🏼🙏🏼
My wife just had her first infusion after 5 years on rbif. 24 hours later she feels amazing. Doubt it would make that much of a difference so fast but ill take it
Tysabri worked very well for me but as my PML level changed and my odds went down I decided to change to Ocrevus which seems to be working fine.
I loved Tysabri!! It gave me some energy back and stopped relapses in their tracks. I was taking Betaseron and relapsing 3-4 times a year. Neuro believes I’m still walking because of it but won’t let me go back on it because it altered my immune system? Taking Gilenya and it’s working well.
I have not been on Tysabri but I have heard wonderful feedback from those on it. I wish the infusions were less frequent. Though, when I get Ocrevus infusions the Tysabri folks are in and out much quicker!
Roche is testing an infusion time that is half as long, so only 2 hours. until now it looks like it doesn't have any side effects, so maybe in the next 1-2 years it will officially change to 2-3 hours :)
I absolutely LOVED Tysabri. I started with a positive 0.6 JCV. I found the dosing to be easy. After 16 years of shots (Copaxone), it was such a relief. I felt better than I had in years. I was ANGRY when I had to stop bc my JCV went up to 2.2 and I had to start Ocrevus. It ended up being okay, though. I like Ocrevus, and it has kept me able to get myself healthier overall. (weight down, fitness up). I would say, as a patient who was on Tysabri for 4+ years, it's a great DMT... until you have a scary and sudden increase in JCV! But then, you just go off of it, go through a wash-out (IV Solumedrol which wasn't "fun"), and then you can choose Ocrevus or Lemtrada. (Doc, why again did we NOT choose Lemtrada? I just found out my Health insurance will be gone on Jan 1st, 2021 (the company is "dissolving" the group and putting us on the open market, which may not be there or be affordable). I think I'd be less panicked bc I would have had my second dose by now, and felt some sense of long-term protection. What, again, was our reasoning?)
Sorry mate,did u put on weight while on tysabri?
I was diagnose in may this year. My doctor believes ive had MS for at least three years. He out me on tysabri right off the bat. Loved it at first. In August ive got new symptoms that wont go away. Im still on the treatment though.
Are you still on Tysabri? How are you feeling now?
I have been on 5 DMD over the past 14 years. I was on Tysabri two different times for 2.5 years each time with a 2 year break in between. I came off since my titer increased significantly. I felt amazing on Tysabri and never developed new lesions while on it but developed new lesions on Rebif, Gilenya, and Tecfidera. I have been on Ocrevus for a year and no new lesions but feel absolutely terrible 6-8 weeks before my infusion and for 2 weeks after. In fact, no other drug made be feel as bad as Ocrevus has. I felt better during my relapses then I do while taking Ocrevus. Would love to go back on Tysabri but unfortunately I am not willing to take the risk considering my high titer and being on it for 5 years.
If you feel bad 6-8 weeks before the new infusion, it could be you that your B-cells grow back faster, and you can move your infusion 1 month up so it's every 5 months. talk about it with your neurologist :)
QOTD: if you’ve taken TYSABRI, how would you describe your experience with the therapy?
Hello Aaron, I've never taken tysabri but I am currently taking gilenya which unfortunately seems to be failing me. I have an MRI scheduled for this coming Tuesday, hopefully from there my practitioner and I we'll discuss tysabri. Fingers crossed brother.
Tysabri was by far the best DMT for me! I would go back if I could. Unfortunately I became JCV+ with a titer over 2. The word PML was scary. At that time I did not have a good understanding of the risk vs reward. Today with more knowledge I would have chosen to continue Tysabri.
I was on Tysabri for 6 and a half years. JCV index 2.7. Done my second dose of Lemtrada and feeling fine. Tysabri was a roller coaster but it was very effective. Lemtrada has other risks but I’m well monitored with blood work once a month.
It took me 2 months to recover from a sinus infection, longest i’ve ever taken to recover from an illness. Not sure if this is due to the immunosuppressant properties of tysabri
Aaron Boster MD and extreme fatigue after infusions for at least a week
random question about tysabri and anemia - reading some literature as i go about investigating my recent major drop in hemoglobin after i had finally returned to a decent baseline after a surgery to fix what I thought was the culprit - Turns out there is some linkage between anemia and hemolytic anemia. Thoughts on this and, I really don't want to switch drugs but I also do not want to continue having to take iron :)
Happy Halloween a bit Early!
"The following adverse reactions have been identified during post approval use of TYSABRI. Because these reactions are reported voluntarily from a population of uncertain size, it is not always possible to reliably estimate their frequency or establish a causal relationship to drug exposure.
Blood disorders: hemolytic anemia" (FDA)
How about starting tysabri and having other infections, such as the hpv virus with cervical dysplasia and having suffered from viral encephalitis at a young age?? Is it risky at all..?
Husband's JCV is 3.93...
His doctor is putting him on Tysabri in a few days....is he at an extreme risk of PML?
Thank you!
Morning Dr. B! How do we come in contact and get the JC virus?
Hi Shannon,
JC VIRUS is etiologically associated with a fatal demyelinating disease known as PML... The high prevalence of JCV in urine and in sewage and the stability of the viral particles observed suggests that contaminated water, food, and fomites could be the vehicles of JCV transmission through the oral route. I hope this helps
MATT Z thank you 😊
Can you do a video on alemtuzumab please, what happens when you relapse twice after having the drug?
He's already done one and talks often about it, but here is one Gillian. I will say this it's been the best decision I've made for my health. Highly effective medication.
th-cam.com/video/e9IOwli-iNg/w-d-xo.html
There already is an alemtuzumab q&A? I've no doubt it's one of the most effective drugs they have. I've already had both rounds of infusions. It's the only drug so far reducing my relapse rate.
Dr. Boster, are you born with MS? What causes it to become active?
For me, I went to bed and woke up with a numb shin, and it spread to my foot and then saddle numbness.
Have you ever considered using testosterone replacement therapy due to its neuro protective properties? Also I have heard that human growth hormone Can Potentially help with remyelination?
layman frank here you go: th-cam.com/video/jm-Dk6lvW8M/w-d-xo.html
@@AaronBosterMD ah very cool. I just stumbled on your channel. Very useful information Dr. Boster. I'm goin to continue my testosterone replacement therapy and use HGH along with my tecfidera... hopefully it helps my situation. Thank you!
Pretty cut and dry vlog
What do you mean by cut and dry Matt?
@@AaronBosterMD So what I mean is the message is clear on medications, and the JC virus and what to do if you're titers are high and how to approach it if they are.
+MATT Z thanks Matt!
Is tysabri the same as it was 12 years ago? It didn't agree with me then but will it work now? I was jaundice at that time on it. I was wondering if the same thing will happen again. My symptoms have become a lot worse. I am on another medication but I don't know if it's working.
Sharing
RS