New member and Tysabri

[AG2018]

Hi My names is Anne

I was finally diagnosed After many “episodes” in 2015. My doctor has prescribed Tysabri. How do y’all feel about this treatment and what side effects have you experienced.

Thank you Anne

[Jesmcd2 CommunityAmbassador]

Hi AG2018 welcome!

I don't take tysabi, so can't help you there. But I'm sure there are many that can. ☺

You can also look up some of the past posts about it, by looking in the search bar.

But I'm sure someone here will tho 🤗💕

J🌠

[Fancy1959]

Good morning Anne, it's Fancy1959 and I would like to officially welcome you to this and awesome chat room. You have found a safe place to come and ask questions, voice concerns, seek information, or simply speak to others who truly understand what you are going through. You will soon find out that you are surrounded by the some of the most caring, compassionate, and kind of people you will ever want to meet. Now on to your question

I took Tysabri soon after I was diagnosed. I was put on my first DMT, or disease-modifying therapy as it is called, and almost immediately had a new relapse involving my eyes. My neurologist immediately put me on tysabri. I was also JC positive so in my mind I kept an eye on myself. It's a Sabri greatly help my MS and about 7 months in had actually reversed a few side effects and I was feeling stronger and better than ever. But went on tysabri what must keep and ion possible side effects from the infusion. If you find a neurologist suit doesn't routinely check your JC virus count you probably need to find a different neurologist. Trust in yourself because you are the best advocate for your health. I was switched to a different DMT as soon as it came out because of my JC positive risk. About a year-and-a-half into the new DMT my Ms started to break through and my disability rapidly increased. I was diagnosed with secondary progressive MS and the doctor pretty much told me there wasn't a lot he could do for me at this point so you put me back on tysabri and all but walked away. I soon found a new neurologist and they put me on the list to get on the brand new drug that he come out called ocrevus. In the meantime I stayed on tysabri for a couple more months but when my side effects got so severe that was all but fainting from the infusion, was disoriented and weak from the infusion so right then and there I took myself off of it. I didn't care what happened until I got on ocrevus but I knew tysabri wasn't safe for me anymore. In the meantime I finally qualified for Social Security and started on Medicare.

If you are not JC positive tysabri is a wonderful miracle drug and will potentially improve and stop your MS in its tracks. If you are JC positive make sure you have a neurologist who stays on top of your reactions and JC count. The drug did wonders for me until the JC positive issues reared it's ugly heads. There are new therapies out there that promise to do as much as tysabri and have lower risks involved with them. So as always I would preach that knowledge is your friend and research tysabri as much as you can to get a handle on it. Then go ahead and research some of the newer therapies out there for MS. And see what they have to offer. Then go to your neurologist with your notes and him to answer any questions you have on the different Therapies. Remember even some of the newer therapies and tysabri usually have copay assistance if you can't afford the DMTs yourself. Your neurologist should have more information on the co-pay assistance programs out there.

I hope my rambling reply helped you somewhat. But again I wanted to say we're glad you joined our chat room and you're not part of our family. I look forward to speaking to you often and soon! The more we interact with one another the quicker we will get to know each other. I am certain there is much we can learn from each other! Until we speak again please take care and remember that together we are stronger! Fancy.

[AG2018 in reply to Fancy1959]

Thank you so much for welcoming me and giving me so much input. I am JC Negative but am nervous about the infusions. ❤️

[greaterexp]

Welcome to this great forum. It was a lifesaver for me when I began navigating through the beginning stages, and it still is now.

I hope to see some responses from people who take Tysabri, but as Jesmcd2 wrote, it’s helpful to find past posts by using the “Search My MSAA Community” tool.

We’re looking forward to knowing you better.

[Kenu]

I was on Tysabri for seven years and the only side effect was fatigue for a day and half. Did them on Friday afternoon and by Monday I was back at work. No new lesions and old ones stable. I got stage four throat cancer and had to stop for chemo and radiation. I am now on Aubagio for last eighteen months and doing great 👍. Hope this works out for you 🙏😉🐾. Ken

[Jazzyinco]

Hi & welcome, i absolutley agree w/Fancy, do much research on it, here @ the past posts & @ National Muliple Sclerosis. Society, they have all the effects +scary JCVirus side-effects too, everything u need to know. & can't wait to get to know u bettet.😍🙏💜Many Blessings to u.---Jazzyinco

[MS2014]

I have been taking Tysabri since 2014. It has worked well for me. I worry about the virus and pml. M

[Raingrrl]

Hi AG2018 ! I was on Tysabri for 5 years. I had no side effects and it kept my MS stable. If I wasn’t JCV+, I would still be on it.

[kdali]

I'm all for this treatment, but I'm waiting to hear back from my doctor as to how often my infusions will be and what monitoring we will do.

[Texandyroe]

Hi, Anne, and welcome to this awesome forum! I have been on Tysabri for over 4 years, and have never had a side effect. Also, yearly MRIs show that there have been no new lesions, no growth or movement in the lesions - in other words, I've stayed stable since I started Tysabri. Jus make sure your neurologist tests you every so often for the JCV virus (mine tests me once every 6 months and so far, so good. Wishing you the same success as you start this new journey. Again, welcome. Blessings, Sandy

[AG2018 in reply to Texandyroe]

Thank you for the reassurance. It’s very scary.

[MS_Indestructible]

Welcome Anne, this is a great site to be involved with. You can post whatever you want, ask question and or review other posts. Being scared is "normal", we understand so vent in a post if you want or need to. Tysabri is scary but it is a good DMD to be on. You might be on it for a few years or for just a couple of infusions. You might be on different DMD during your new Journey. As you create your "normal" keep us in mind.

As you do your research, look at Ocrevus, it is an excellent DMD to move to after Tysabri. Thought it is a new DMD it is the "cousin" of Rituxan [please review my previous posts on Rituxan and Ocrevus]. Rituxan has been around for 20+ years and has been used off-label for MS.

Please know, your fear of MS and this new journey will subside over time. Read over previous post that interest you. The more you learn the better you will feel. The nice thing about this site is the people you will meet. We are all Real people and we post our real feeling and thoughts. Read and post as you are ready. I too look forward to reading your posts and to find out how you are. Here you are safe, and here you can question thing without someone having an "agenda".

Be good to yourself, we care ~terry

[lindaz9]

HI THERE. I HAVE TAKEN TYSABRI FOR OVER ONE YEAR NOW AND HAVE HAD NO SIDE EFFECTS. SO FAR IT IS DOING WHAT IT IS SUPPOSED TO DO; STOP THE PROGRESSION OF THE DISEASE. GOOD LUCK!