Coming up on third full infuson

[PositiveMS]

Hi,

So I haven't been on this site in.....a really long time! I'm coming up to my third full Ocrevus infusion at the end of August (1.5 years) and I thought I'd share my experience. That, and I have a lull in my workload today and am slightly bored, haha.

Here are my thought on Ocrevus after almost 1.5 years. I am SO glad I made the switch to this med. I am so much stronger than I used to be on Tecfidera or Copaxone. For me, the change is awesome. It was all so gradual that I can't pinpoint exactly when things got good, but they have improved a lot. I have a lot of freedom back. My legs are still spastic, but they feel really strong. I swim twice a week, and now I don't feel tired the day after swimming. My balance is way better, and I don't feel shaky anymore. If it wasn't for the spasticity, I would feel 100% back to normal. I'm excited to continue on this med.

I still take Fampyra but I am curious to see if I can stop taking that altogether. We'll see!

[pennstater]

Thanks for sharing. I am really happy for you that you have not only remained stable, but actually experienced some improvement! Hope you continue to feel well.

[Boudreaux]

That's awesome! I hope you continue to feel well.

[Golgotha]

I have nothing bad to say about Ocrevus either; I've been on it over a year.

And as someone who did Copaxone for more than a year, I'm shocked that people are still on that DMT. Not only the barbarism of sticking yourself and those welts and such you'd get, just the hard science is that in ~30% of people Copaxone does absolutely nothing -- to me that screams that Copaxone should be relegated into "retirement" status.

In this non-doctor's opinion, there's no valid reason to use Copaxone unless a patient has severe intolerances to every other DMT out there. Copaxone's efficacy is just too low.

[Seasha]

Welcome back PositiveMS! So glad to hear you are doing so well and have shown some important improvements

I wish for you more improvements in your future!

[oceanpride]

Thanks for the update. This is encouraging. I had my 2nd full dose one month ago. I guess for the most part... other than a few bouts of fatigue and spasticity... I’m doing ok on it.

[PositiveMS]

Thanks for the support guys
Golgotha, I agree with you on Copaxone. The one year I was on it was not good, I had three big relapses and I was stressed out all time with injections. If I had to do it again, I wouldn't. I feel like it may have made me worse, to be honest.

Ocean Pride, good to hear form you again my Maritime friend! It took me a while to really feel concrete benefits from Ocrevus. The first year was a bit of a roller coaster, but now I feel so stable and good. Hang in there!

[Golgotha]

If I had to do it again, I wouldn't. I feel like it may have made me worse, to be honest.

That's my opinion too. I was on no DMT before Copaxone, so my neuro wanted me on something ASAP. When they started talking about PML risk they did a poor job relating stats about that and the horror stories of that are no doubt scary. So Copaxone was an easy sell -- and I'm not squeamish about giving myself a needle.

Of course, the fact that Copaxone does nothing in a significant amount of patients was not mentioned.

Since that time I've been on a kick to pull my head out of my butt and get serious about learning about MS.

[Jade Divine]

Thanks for posting Positive MS. I was searching for experiences on Ocrevus and yours is so helpful. I have my first infusion on August 2. I, too, was on copaxone and it was awful. I do believe I got worse on that medication. So I am hopeful that my experiences will be as good as yours.


Jade

[PositiveMS]

Thanks for posting Positive MS. I was searching for experiences on Ocrevus and yours is so helpful. I have my first infusion on August 2. I, too, was on copaxone and it was awful. I do believe I got worse on that medication. So I am hopeful that my experiences will be as good as yours.


Jade

I hope you have a good experience too! It was a bit rocky after my first infusion, but it got better. and then better. I don't get affected by humidity much anymore either. I used to hide in my apartment when it was sunny out in the summer. Now I routinely take my cane or walker down to the grocery store and back, whether it's 20 degrees or 30 degrees. It hit me last week that I managed to walk the 5 blocks home in 30 degree sunshine. I never would have been able to do that before. It takes a bit of time, but I am so pleased with the effects of this medication. Best of luck