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A MyMSTeam Member asked a question 💭
Connecticut, CT

Im 27 years old. I just got diagnosed two days ago and my neurologist wants me to get the Tysabri infusions. After everything I have read online, it seens like this treatment is a last resort. Why would I be starting right away after just getting diagnosed and never trying any other treatments? It seems like there are a lot of risks with this treatment. Has anyone else had these infusions?

July 22, 2018
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Answer Summary

Many community members responded to a newly diagnosed 27-year-old questioning why Tysabri was being recommended so soon, with the reassuring... Read more

Many community members responded to a newly diagnosed 27-year-old questioning why Tysabri was being recommended so soon, with the reassuring consensus being that Tysabri is not a last resort but rather a highly effective first-line option for aggressive MS. Several members shared personal experiences with Tysabri, noting benefits like shrinking lesions and no new MRI activity, while also emphasizing that the key risk to monitor is JCV virus status, which can make the treatment unsafe. A recurring theme was that doctors are now treating MS more aggressively early on to prevent long-term damage, and members encouraged asking questions, seeking second opinions, and trusting that treatment plans can always be adjusted.

A MyMSTeam Member

@A MyMSTeam Member it sure is a random world. There is no rhyme or reason how things play out. We just play the cards we are dealt as best as we can... :)

July 25, 2018
A MyMSTeam Member

My neuro put it to me this way... they are wanting to alter the course of the disease, they cannot cure it, but they can "Try" to alter the path. There are 4 generations of MS meds out there according to my neuro... If you are newly diagnosed and they are treating it aggressively, look at that as a compliment I think. They are not wasting time and they are going with something they think/know works aggressively. If this is something you are willing to take a chance on and it can possible alter the course of the disease, then you need to be strong and committed to your decision.

As for me, I am holding off on treatments for as long as possible. As long as my symptoms are contained and minimal, I am good with what works for me. Everyone is different, this is a disease that is unlike others. This disease affects every single person differently, unlike say a cancer (which there are more similarities amongst patients (symptoms, location, treatment options) than those with MS)). We each have our own path and yes, we can share some symptoms, but not all of us suffer from all the same symptoms. The path that we forge is our own and thankfully, there is a great group of people out here/there that is willing to offer support to one another and share information, this group is a blessing....

July 25, 2018
A MyMSTeam Member

I was on it for 7 1/2 years it does stop the progression. I am now on Ocrevus. Agreed you could have had ms for a long time i had symptoms for 11 years and I knew that I "might of had MS" but was not diagnosed tested but diagnosed after 11 years. It is effective Tysabri

August 1, 2018
A MyMSTeam Member

If I was diagnosed in my 20's I would choose the most aggressive treatment there was. Anything to prevent a relapse. I thank God this disease did not rear it's ugly head until I was in my 50's. You have your life ahead of you and the spectrum of quality is up to you. And like someone said earlier you can always change the DMD. Best Wishes.

July 23, 2018
A MyMSTeam Member

There's a lot of risk with all MS meds, not just Tysabri and it's use seems to be designed for "highly active" RRMS. I don't know if you've had multiple MRI's showing "rapid" progression or not, neither do I wish to freak you out.
Here in the UK, for me at least, I had the choice of what med to start, in America it seems a lot of your decisions are made by insurance companies based on cost and it may or may not be associated with that. There's always a danger of overthinking these things because there's different choices out there, the only thing that matters is if it works for you, you can always change if it isn't. At my worst if someone said eating dog doody would help, I'd be doing that, they all just give you a chance of improvement, not a guarantee.

July 23, 2018

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