Ocrelizumab for PPMS

[jbuff]

In about March, 2012, I will be entering a new clinical trial for Ocrelizumab and its effects on PPMS. It is a double-blind placebo type test (or that is close). It depletes one type of B-cell. Worrisome that is causes immune deprivation. I will keep people posted on if it helps: balance (walking, standing) & fatigue (my primary difficulties).

[Redwings]

Originally Posted by jbuff

Worrisome that is causes immune deprivation.

Hi jbuff:
Have you received full disclosure of the risks yet (e.g., the deaths in the RA trials)?

[jbuff]

I too hope I get the "good" stuff when the clinical trial for ocrelizumab starts in about March of 2012. I do not know all the details of the ocrelizumab testing and will not until the trial starts in about March. But I have a most positive outlook and think anything can be better than the progressive disability that I am experiencing. I'll keep the group posted - they will know as I know!!

[lori]

Thank you and best wishes for good results.

[Manu]

Hi Jbuff,

I am living in Belgium and already started the phase III trial.

I started at 7/2/2012 and going well so far.

Good luck my friend

Manu

[CougarMama]

That's great that you choose to participate (I have done a couple of studies myself) and best of luck on your treatment assignment. I hope it helps you! I'll be looking for your posts.

[Torn]

I too am looking at starting it this month. My first appt is next week. The study I'm in is used with rebif. It is for rrms though. I'm anxious to hear more.

[COJeepGirl]

Hi jbuff,

I am also in the ocrelizumab study. My first infusion is April 17. If you would like to discuss/compare notes let me know.

[Manu]

Any news so far ?

I started the study on february 7th and feeling good.

Regards

Manu

[Daisy Dead Petals]

During pre-enrollment I got de-selected for having taken Gilenya in the past. Otherwise I was a prime candidate. Disappointed.

[LorenG]

HI,
I HAVE JUST STARTED THE OCRELIZUMAB / REBIF CLINICAL TRIAL YESTERDAY. I WOULD LOVE TO TALK TO ANYONE ELSE WHO IS DOING THIS STUDY. I HAVE RECENTLY BEEN DIAGNOSED WITH RRMS AND MY DOCTOR THOUGHT THIS WOULD BE A GOOD CHOICE FOR ME. THE INFUSION WENT WELL, BUT THE REBIF/PLACEBO INJECTION WAS A DISASTER AS I HAVE NEVER INJECTED MYSELF BEFORE. THE NURSE TOLD ME THAT IT WASN'T AS BAD AS I IMAGINED IT WOULD BE BUT IT WAS WORSE! LOL. I JUMP WHEN I FELT THE BURN AND THE NEEDLE CAME OUT AND I LOST MOST OF THE MEDICATION. I WAS IN TEARS, AS I FELT LIKE A HUGE BABY. I HAVE TO INJECT MYSELF TOMORROW AND I AM VERY NERVOUS. I DON'T WANT TO MESS IT UP AGAIN. ANY ADVICE WOULD BE GREATLY APPRECIATED!