Forum

Changing Treatment

Hi Everyone,

I am new to this forum! I am diagnosed since 2010 and have been on Rebif (3yrs), Tysabri (1yr) and Gilenya for the last two years. I have had some issues with cell changes and expressed this concern to Doctor. He is suggesting to put me on Copaxone injections. This feels like a little step backward after being on the stronger medications. I am worried it won’t be enough and I will end up relapsing.

Has anyone moved from the stronger meds to Betaferon or Copaxone? If so do you mind sharing your experience?

It feels like the right thing to do but I am nervous. N

Hello Nora

I can’t exactly answer your question but didn’t want you to feel ignored.

You have gone through a number of DMDs. I’ve had to stop 3 because of side effects and one because it stopped working. I’m now not able to have anymore because of the side effects (lymphopenia and hepatitis) and in any case I’m probably secondary progressive now.

I understand your worries completely, do you definitely have to stop Gilenya? What are the cell changes?

If it’s necessary for you to stop Gilenya, being on Copaxone for eg is better than nothing. I suppose you can’t take Tecfidera? (Are you JCV+? Or had lymphocyte problems?) In any case, recently there’s been info on the Barts Blog that Tecfidera doesn’t work as well when it’s not the first DMD a person has taken.

Hopefully someone else will have done exactly what you’re being advised to do.

Sue

Hi,

RE: “I am worried it won’t be enough and I will end up relapsing.”

I had 8 years of Betaferon injections and then stopped. I now have SPMS. Not on any treatment.

And, I’m sceptical that Betaferon did anything at all. I still had 2 relapses per year and they seemed always to be linked with

an infection at lease 10 days prior to my relapse.

When I was infection free, I seemed to be relapse free.

But that’s me being anecdotal.

Or is it that even without having a “relapse” the disease progresses quitely regardless, and this obsession with counting

relapses is totally void - ie nonsense!

Is there any “science” behind these DMDs at all?

You might as well toss a coin when deciding on which treatment!

SORRY.

Fay