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Weighing the Benefits and Risks of Your MS Treatment

Receiving a diagnosis of multiple sclerosis can be overwhelming for several reasons. One the most overwhelming aspects about this diagnosis comes when you are trying to decide what the right treatment plan is for you. There are many treatments available for MS and the associated symptoms, including prescription and non-prescription options. As is the case in making any major decision, it is important to weigh the benefits and risks of each option so that you can make the decision that best fits your needs. While it is important to heed the advice of your doctor, you also have to make sure his or her recommended treatment plan is right for you.

One of our newly diagnosed community members wrote the following: My first documented relapse happened the day after Christmas in 2013. I woke up paralyzed from the waist down. After a month and half hospital stay, I was finally diagnosed with multiple sclerosis. My neurologist thinks I should start treatment with Tysabri, even though I’m JCV positive. My neurologist is adamant that a more aggressive treatment would help me greater, even though there is a risk of PML. My first infusion is next Tuesday and I’m pretty nervous. I was hoping to hear some encouraging story, from people like me.

Cathy Chester MS advocate & bloggerResponse from Cathy Chester:

I don’t take Tysabri and I’m not a medical person, but are you sure you want to go ahead with the infusion despite being JCV positive? You may want to read this article to provide more information about Tysabri and JCV before making your final decision. If you are not satisfied with your doctor’s response I suggest you seek a second opinion. Please let us know if we can be of any other help, and keep us posted.

DSC_0855 Response from Laura Kolaczkowsk:

I am on Tysabri and continue to test JC negative. I do know people who are Tysabri and are JC positive and have decided the benefit outweighs the risk. It is a tough decision and a decision you can and should revisit with your neurologist if you have doubts. One thing that has changed for the JC+ people is the aggressive screening. You can expect MRI’s more often and continuous questioning from the medical staff. There is also a fairly new, but rigorous treatment protocol that has been developed to treat people who develop PML. Your neuro should also explain that to you. Good luck with this decision – it is a tough one that ultimately only you can make. I should have added a friend who has tested JC+ all along, continues with her Tysabri because it is the most efficacious MS drug available to us. She has been on it over 5 years now, with no regrets and no signs of PML.

Tell us more about your experience when you were first diagnosed. What was your first treatment? Is that the same treatment you are on now?

Comments

  • catherine
    5 years ago

    I was diagnosed in March 2010 after becoming paralyzed from the waist down. My original neurologist put me on Copaxone and four years later it still has had no effect on my MS. The inflammation was constant and I was told that the symptoms were to be expected. So I got another doctor because the symptoms were in fact relapses. I am now being treated at an MS Center and was tested for JCV. I tested positive. My doctor took Tysabri off the table for use; because PML can be fatal. Tecfidera seems to be my only option right now.

  • Cathi
    5 years ago

    I have been on Tysabri since April 2008, am positive for the antibody & have had no huge problems or exacerbations since I started using it. I WILL occasionally have a few days of stomach problems post-infusion but that’s a very, very, very small price to pay for the stability I’ve received by using Tysabri. My college motto was “When in doubt, do it!” & many years later, it has served me well! Good luck!

  • Kathy Redifer
    5 years ago

    I too was using Tysabri. Was on it from the beginning until 9 mos. ago. Was tested for JC virus. It was positive. Doc and I talked about pros and cons. I decided to continue because Tysabri was working and at the time was considered one of the best therapies available for me. I had no exacerbations since starting on Tysabri. When doc took me off Tysabri, it was because I had 3 strikes against me – I had had chemo just after my diagnosis. I am now on the new oral med, Tecfidera and so far no regrets. Good Luck!

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