Mid exacerbation and switching meds - advice???

[DCat23]

I’m in the middle of an exacerbation (numb and tingly from toes to stomach and back on both sides of the body, issues with hands). Just had 4 MRIs done revealing multiple active lesions on brain and c-spine. Currently on IVIG but since this dr. Wants to switch me to either tysabri or Rituximab after a dose of steroids. I’ was hoping he’d put me back on Copaxone which was what I was on before having my kids and did well for me. The side effects of the two new drugs have me a little scared. Can anyone share their experience with either drug positive or negative?

[pennstater]

Sorry for the relapse. Hope you recover soon.

I am on Tysabri, think my 68th infusion. I was on Avonex and Rebif before, but was relapsing. I started on Tysabri, no relapses.

I was nervous to go on it, but the more I learned about the PML risk factors, the more comfortable I became.

They will test your blood for JCV virus. If negative, no reported cases of PML and no risk. If you test positive, they look at what is called a titer number. The higher this number is, the higher the risk. I believe the Tysabri thread in medications has this info.

I am still JCV negative and get tested every 6months. I pray I remain that way. I really feel better on Tysabri. If the infusion is delayed I feel it.

I do have trouble with respiratory infections but will take this side effect.

[Myoak]

Hello DCat,

I am so sorry that you are experiencing symptoms and have MRI evidence of disease progression. I wish the best for you.

At the risk of seeming insensitive may I comment plainly?

First, you mentioned you hoped to go back on Copaxone because it did well for you. I do not agree that it did well for you because if it did you would not need IVSM, nor would you be experiencing disease progression. Doing well is called NEDA (No Evidence of Disease Progression). Both Tysabri and Ocrevus have astronomically higher percentages of NEDA compared to Copaxone. That is why the neurologist suggested one of those. He/she has proof that whatever you have been doing and are presently doing is not sufficient to arrest disease progression.

Tysabri and Ocrevus are new to you and new things are often scary for all of us, however, MS can be far worse than either of those. Not treating MS in the most effective way possible is much more frightening than either of those drugs, IMO. People on those drugs rarely get new lesions. Both reduce new lesions by 90% or more.

There is plenty of info at this site about people who are taking Tysabri or Ocrevus. I believe those posts would relieve many of your fears.

Please consider risking your future health on something currently working very poorly when something better is available.

Are you a baseball fan? You may know that ERA is earned run average. All pitchers have ERAs based on how many runs they allow. Which is preferable, a pitcher with a high ERA or a low one? If you want to win a game you want the lowest ERA possible on the mound.

Let's say MS is like a baseball game and the meds are the pitchers rated by how many lesions they allow. How long do you want to leave a med in the game experiencing lots of lesions? Now, in the bullpen you have two pitchers, or meds, you have no personal experience with but you know they both have superb ERAs. What do you do?

Very likely, you will find they are not scary at all once you try one. They are both supremely better meds than your old one. Plus, you can always go back to Copaxone if you really want to in the future.

Forgive me if my illustration is juvenile. The goal is to think soberly and accurately about DMTs.

I wish you the very best whatever you decide. And, I am praying your present symptoms resolve quickly. God bless you and your family.

Rolly