At a Crossroads

[scampergirl]

I have been on Avonex for nearly 8 years, it has kept me stable but the last 9+ months I have been noticing an increase in my symptoms. My recent MRI shows that I’m stable but I sure don’t feel that way. My legs have become heavier and the paresthesia is more intense just to name a few things.

I was thinking about switching to Ocrevus but I has wanted to wait until it has been in the marketplace at least 2 years, that would give it enough time to bring some of the side effects to the forefront, ie: PML. I had contemplating going to Gilenya in the short term but I don’t want to be switching back and forth.

Has anyone else had this kind of dilemma? I tried discussing this with my doctor but I can’t get an answer as to whether he feels I should switch now or wait. He did say that they are very comfortable with Ocrevus. and understands my reason for wanting to wait. Maybe that's not the best course though.

[REG53]

Hello scampergirl, I have never had this kind of dilemma but I have changed meds. several times. My first med was Avonex my next was tysabri then tecfidera and now I am on ocrevus. I changed ea time because of progression. I had to stop tysabri because I was Jcv + and the risk of PML was high. so my neuro suggested I changed ea time.

Whatever you decide I hope it works well for you.

[pballer76]

Changing meds over and over

I stayed on avonex for 1 year. Then it was a few months of Rebif. I had new lesions with both and multiple relapses. Then I was on Tysabri for 6 years. Had to stop because of JCV+. Then it was Tecfidera for about a year, I developed psoriasis. Neuro switched me to Gilenya. I had a dangerously low lymphocyte count. So my Neuro put me back on Tecfidera. The psoriasis finally stopped. Remained on Tecfidera for 2 years until lymphocyte counts we're dangerously low. Neuro asked to switch me to lemtrada or ocrevus. I chose Ocrevus. Hopefully I can stay on this for awhile. I dislike switching DMTs.

[Temagami]

Curious- when you say dangerously low lymphocyte counts, what were they?

[pballer76]

Absolute lymphocyte

My absolute lymphocyte counts were .22 at the lowest.
I remember my Neuro saying anything below .5 on Tecfidera is a problem.

[palmtree]

That is a big jump in effectiveness from Avonex to Ocrevus. But since Avonex has not been associated with PML, it seems you would be in a good position to make the plunge. I went from Avonex to Tysabri and the transition was extremely smoothe.