Tysabri

[Katcatkit]

Hey there I have been diagnosed since2006 and have been on rebif since then have been relatively good in the last few years have minor relapses numbness brain fog but continue work and life but my MRI shows new spots and doc recommends tysabri.. kinda scary stuff since I am I getting by now and after two years it's questionable should I wait til I feel worse or stay ahead of?????

[Kimba22]

Hi Katcatkit,

Welcome to MSWorld!

It makes sense that your neurologist would like for you to change medications because you have new lesions (spots) on your MRI. You shouldn't wait until things are worse before you change medications, because once the damage is done there's no going back. It's been done.

Tysabri has been shown (in most cases) to have the highest effectiveness, followed by the oral medications Gilenya and Tecfidera. Getting PML while on Tysabri is scary. But, in order to get it you must have the JC virus. There's a blood test that will determine whether or not you have it (you wouldn't know, since right now your body is able to keep it from attacking your brain). There's an even more specialized blood test that can help determine how high your risk is, because of the number of antibodies your body has if you are JCV+. As long as you remain JCV- you won't get PML. But, you should also know their can be false negatives and even if you are negative, you can be exposed to the virus at any time and convert to positive. That's why you should be retested a few tines a year.

MRIs can detect PML (even before someone has symptoms) and it is important to report any sudden decline you may experience to your neuro ASAP so PML can be ruled out. The quicker it's detected, the better the prognosis. I know that sounds overwhelming, but for many peopleTysabri has been a godsend for their MS. Besides being JCV+, other things can increase your risks, like the length of time you've been on it and if you've ever been on a chemotherapy drug. The risks are considered very low for the first 2 years. There have been an isolated few cases where PML has also shown up with Gilenya and Tecfidera.

A lot to think about for sure, but so is accumulating more damage. And it takes awhile before that damage can manifest itself in symptoms you will notice. But it's too late by then. There are other drugs you could also try (they all have about the same efficacy as Rebif, though), but your neurologist must be concerned with the amount of new disease activity that's occurring and want you on a drug with greater efficacy.

Good luck in your decision, and feel free to ask any other questions you may have.

[pennstater]

Kimba gave you great info

I was on Rebif from 2007 to 2012 and switched to Tysabri. I wish I had started sooner, but neuro was conservative. But once more data on usage and way to monitor risk for PML was available, he recommended switch.

If you are showing progression, I would definitely consider Tysabri or something more effective than Rebif.

Good luck with your decision.

[ru4cats]

I would like to recommend a youtube video by Dr. Vollmer from the RMMSC in Colorado. It is entitled "Maximizing brain health." Dr. Vollmer goes through why maintaining brain health is the 1st priority with MS, and about halfway through he goes through all the current medications and why one should or should not choose each one.

For me it's a no brainer; Tysabri is the current DMD with the highest efficacy, and I will have my 61st infusion this Friday. However, I realize each individual needs to make a personal decision, realizing and accepting the negatives. My goal is quality of life, but then I am 63; life without quality would hold little value.