Tysabri

[Mark1499]

I have been taking Tysabri for 3 1/2 years now. I have had zero relapses and no side effects from this drug or DMT. My only concern was my JC level which is now .94 at one point I became 1.24, but then on my next blood screening, I was Josie negative for two straight with drawls. I understand you don’t want to get above 3.0 are you risk a PML my neurologist says there are people that have been on it for 10 years with no problems. I personally am a believer in Tysabri and unless my JC level gets too high, I will continue to take it, I hope this helps anyone deciding on which DMT to take

[Xvettech]

Hi. I’m on Kesimpta right now, which is incredibly expensive. What is Tysabri and how does it work? Any info is appreciated! Thank you in advance 🙂

[sashaming1 in reply to Xvettech]

tysabri.com

[Xvettech in reply to sashaming1]

Thank you!

[Mark1499 in reply to Xvettech]

Sorry for the late reply. I just saw your post or replied to my post. Tysabri has been around for about 10 years and is known as a front line DMT. As DMT’s go it’s rated number three on the list. I’m infused once a month for one hour, I have not had any relapses since Tysabri but people on the drug have to be aware of their JCV. It’s actually the John Cunningham virus every person MS or not is either positive or negative. If you’re positive when using Tysabri, it can cause your JC level to rise putting you in danger of a PML. 3.0 is the danger level and I’m at I’m at a 1.24 currently. My sister came off of it when she got close to two. I think that’s because she found out someone died from a PML but she is a major over reactor, it’s serve me well. My only issue is it’s cost I’m on Medicare disability and my United Healthcare covers 32,500 patient assistance picks up the rest. Biogen pharmaceuticals. It’s $60,000 a dose. I am blessed and that I have probably the top ranked neurologist in the country and when I was diagnosed I had had MS for five years or more have 75 lesions, which became three black holes, so it was pretty aggressive when I was diagnosed, maybe that’s why he put me on Tysabri.I hope that was helpful. Have a great weekend!

[PLINERW1]

Mark I am sp happy to see you post this. I started with Tysarbi when it first was approved. I was tested with a positive jc level and was told I would be retested to check accuracy of results. I loved the Tysarbi and the results but when positive results came back again I was taken off the med. I have been asking for the last 5 years especially since possible link of the ebstien-barr to M.S, which I was dx with many years ago. I am glad your having great results. Hoping one day I will be able to return to that tx.

[lbenmaor]

Great News Mark!😀

Leslie

[Mark1499 in reply to lbenmaor]

🌞

[Tazmanian]

I was on tysabri until I tested positive for jcv

[Do3ofurom in reply to Tazmanian]

What is jcv

[Tazmanian in reply to Do3ofurom]

John Cunningham virus

[Mark1499 in reply to Do3ofurom]

John Cunningham virus. Everybody has it you’re either positive or negative when diagnosed I was positive. The problem is Todd saber will drive up your JC level. I am out of 1.24 if I get to 3.0, and run the risk of a PML.

[kdali]

Yay! 🎉 I'm jealous that I was unable to try it. There's also a lower risk protocol now if JCV levels rise, as well as a work around for family planning. I hope you go well beyond 10 years on this amazing med! 🙏

[Amore55]

Hello Mark! I had the same experience with Tysabri. I absolutely loved it and did exceptionally well while I was taking it. I was on it for a number of years, but my JC number got too high and I had to switch meds. After that I never was comfortable with any medication and I eventually stopped taking all MS meds in 2016. It ended up being a very good choice for me, but I do NOT recommend it for everyone. It just happens that for myself, it was the correct decision. I really hope that you can remain healthy and can continue to receive Tysabri for as long as it is effective for you! It’s a very convenient and effective treatment, I think. Plus I liked visiting with the people who got their infusions when I did. We really got to know each other.

Keep us posted on how you’re doing, okay? Kelly 🤗

[Do3ofurom in reply to Amore55]

I haven't taken any medication for progressive MS

[Mark1499 in reply to Amore55]

thanks, I have had the same experience with people that infusion centers. Goodness, I’ve been going there so long I’m like family

[Kenu]

Tysabri was the best DMT’s that I was on for 7 years till cancer ♋️ and I had to go off it for radiation and chemotherapy. For myself it was the the best DMT’s I was on out if seven different ones. Good luck buddy 🙏👍🏼😉

[kycmary]

I was on & off Tysabri for over 11 yrs my JC count went up & down, I switched when I kept getting UTI's. I am on Ocrevus for 6 yrs now & doing great got to say Infusion once every 6 months is nice compared to every 28 days is nice. Good luck oh by the way to anybody who cares getting an IV put in yes it hurts like any shot BUT once they get it hooked up it quits HURTING! So if you sit for 1 hour or 3 hours sure beats every day, 3 times a week or even every week I did that also. Mary

[Mark1499 in reply to kycmary]

at some point I may have to come off Tysabri my JC level is 1.24 at this point, but I don’t know what my next will be. How is Ocrevas?

[kycmary in reply to Mark1499]

I love it . Have 5 years done & will start #6 in Jan 24. I have had no problems a slight head some times that I would be hesitant to blame on Ocrevus as seems more like tension mostly.