Experiences with

Tysabri

I've had MS for nearly 30 years and I have been receiving Tysabri infusions since May 2012, but my MS has progressed and I've spoken to my doctor about switching to Ocrevus. I'm just wondering if anyone else has changed treatment and how did it go? Has anyone had positive results?

I was previously had the Ocrevus Infusions and now changing over to Tysabri. At least this time for treatment, will be a little different to where I'll only to have to go twice a month, instead of every 2 weeks; like before. Has anyone had the Tysabri Infusions?

I'm currently taking Kesimpta and was previously on Tysabri. The pamphlet for Kesimpta states PML could develop. My Doctor took me off Tysabri because my JCV number was almost 2. When I asked about it he stated no one on Kesimpta had developed PML. I wonder how they know it's a risk?

I used to be on tysabri and felt great but tested positive for JCV. Don't give up.

When I was diagnosed with MS, I was placed on Tysabri. From what I understand, everyone is either positive or negative for the JC virus even if you don’t have MS. The reason they want to know is that Tysabri can elevate your JC level to such an extent that it can actually cause death.

Or the monthly Tysabri? Which one did you find most effective? The Safety Consideration sheet sounds scary. I would love to hear the cons/pros to your reactions. Thank you all !!

I was on Tysabri for a little over 10 years. I had to come off of it due to my JCV being so high. It stayed positive but below 1 for almost 2 years. When it jumped to 1.71 my Neurologist took me off and 2 months later I started Kesimpta.

Promise I'm not proud of that 😅).For the MS, I was on copaxone, tried on tysabri (couldn't continue, high JCV titre), so back on copaxone until the 1st of my status epilepticus events, then ocrevus, and I'm now on kesimpta. I don't think the kesimpta is working well for me.

Received this in an email today: https://www.nationalmssociety.org/About-the-Society/News/FDA-Approves-Tyruko%c2%ae,-Biosimilar-to-Tysabri%c2%ae,-for?utm_source=imt&utm_medium=email&utm_campaign=fy23_societynewsletter_sep1_fy23&CampaignID=

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

Not on ocrevus anymore, but I had the 1st of my monthly tysabri on the 20th, and I've since got a chest infection 😞 a couple of nights of not being able to sleep properly had really affected me, to the point where on Monday just gone I was wanting to get in to see a GP!

I don’t know about advice, but I can tell you my experience using Tysabri. I have been receiving an infusion—Tysabri—for at 13+ years. After my diagnosis only the ABC drugs—avonex, betaseron and copaxone—were available and I had intolerable symptoms.

I got a call from her assistant saying that I was positive for the JC virus and to stop my Tysabri treatments immediately and that I would hear back from the doctor as to the next steps. That was back in February.

I am on Tysabri going on 13 years and am doing very well physically right now. I have some Cognitive Quirks. But am lucky that all I have no problem with physical mobility. I retired from 13 years on my job quite awhile ago, and had to fight for my SSDI, but finally got it.

The medication is Tysabri.

I have been on Tysabri and will be changing medication. My Dr suggested either Mavenclad or Zeposia. Is anyone on either of these medications, and if so, can you give me your feedback on it? Thank you.

AKA Tysabri. I had to devise an acronym to help me remember. I came up with Natalie Merchant performing atop a Zumba, a disc-like vacuum cleaner that moves across the floor on its own. Kind of a tortuous acronym but it stayed in my mind the past two years.

I am about to begin my exit strategy of my Tysabri infusions after 2+ years. Unfortunately, my JCV has been reactivated and I am not about to continue on it, and amp up my chances of PML. So, my neuro and I are discussing different options at the moment. Has anyone taken Aubagio or Mavenclad?

Trying to get real world pros and cons of Tysabri vs Mavenclad. If bloodwork all comes back fine, I will have to decide on one of these. Currently on Aubagio but due to side effects, I am having to stop it. Thanks for any info you can give.

I experienced something similar on Tysabri although it was only a few days before and 1-2 days after each Ty infusion. I am emotional & overwhelmed thinking that this will happen every 6 months and last for so long each time.