Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

[Manu]

Got back from the doctor. All side effects are due to the medrol/cortizone.

Was happy to hear that.

Today I'm feeling that I'm getting stronger.

Talk to you soon

Manu

[Manu]

Got in the screening for the trial today. Got warned not to have kids, to use double protection and so on. This was unexpected, no risk for now as my girlfriend left me after the diagnosis(women, what can you expect). Not sure what drug will I take if I get approved, double blinded study, could be Ocrelizumab or Rebif, both suit me I think.

any news so far ?

Manu

[Manu]

Hi,

I'm in the US (California) and started in the Phase III study of ocrelizumab vs Rebif.

I had my first dose (well half a dose) on Wednesday. I ran a low grade fever started 40minutes into the infusion.

I had my first "rebif" shot on Wednesday after the infusion. I take my second shot today. I really hope the rebif is placebo.

I feel like the moment of truth is approaching…maybe. In a little while, I will inject myself with either a placebo or the rebif….if I get side effects, then I know that the infusion I had the other day was saline and no miracle cure. If I don’t have any side effects - it doesn’t actually mean anything, b/c the shot is being titrated up to full dose, so it’s a fraction of a dose, so it may be too low to trigger side effects yet. I HATE NOT KNOWING. But in my mind, I want to be delusional and say that if I don’t have any side effects, it means I’m getting the REAL med in the infusions and these “Shots” 3x a week are placebo. Other thought is to make my partner “taste” what is in the syringe…and if it tastes like saline, we will know. LOL. BTW, she said she would actually do that!

Would love to hear how others are doing on the Ocre...

~Keri

How are you doing so far Keri ?

Manu

[LR1234]

Glad to hear you are feeling better Manu x

[Pesho]

Got in the screening for the trial today. Got warned not to have kids, to use double protection and so on. This was unexpected, no risk for now as my girlfriend left me after the diagnosis(women, what can you expect). Not sure what drug will I take if I get approved, double blinded study, could be Ocrelizumab or Rebif, both suit me I think.

any news so far ?

Manu

Hi Manu,

Going to start next week. They just cleared me as healthy enough to enter the trial, isn't that a joke.... Don't know what drug will I get, but I think I will guess from the symptoms. You say you don't have side effects from the Rebif, so there is a very big chance that you are on ocrelizumab. I'm a bit scared from the no kids clause, I'm 28 and while I don't have a girlfriend at the moment, who knows what will happen in two years. Will see how things go next week, not very keen on the idea to give myself shots three days a week .

Peter.

[Manu]

Got in the screening for the trial today. Got warned not to have kids, to use double protection and so on. This was unexpected, no risk for now as my girlfriend left me after the diagnosis(women, what can you expect). Not sure what drug will I take if I get approved, double blinded study, could be Ocrelizumab or Rebif, both suit me I think.

any news so far ?

Manu

Hi Manu,

Going to start next week. They just cleared me as healthy enough to enter the trial, isn't that a joke.... Don't know what drug will I get, but I think I will guess from the symptoms. You say you don't have side effects from the Rebif, so there is a very big chance that you are on ocrelizumab. I'm a bit scared from the no kids clause, I'm 28 and while I don't have a girlfriend at the moment, who knows what will happen in two years. Will see how things go next week, not very keen on the idea to give myself shots three days a week .

Peter.

Go 4 it !!!

[Manu]

Update

Week 24. Got the new 600mg ocrelizumab/placebo this tuesday. No side effects.
Nor do i have side effects from the rebif/placebo.

The only thing that i remarked was that the days before the new dose, i was so tired and niw i fel strong again.

Other participants got any news ?

Best regards

manu

[Manu]

2 weeks after the dose ocrelizumab/placebo I completely feel the difference with the days before the dose. I am very much stronger now then before. Being tired is almost completely history. and I feel like wanting do to things instead of feeling to climb an enourmous mountain every day.

Keeping you posted

I don't understand why other participants don't place their experiences here.

Regards,

Manu

[Pesho]

I don't think there are many participants in this trial. I'm having my second infusion in October, hope it makes me feel a bit better. Not that I'm bad now, but knees hurt and I'm getting tired sometimes. The problem is that I don't know if I'm tired from the MS or just something that is normal.

[Scott1]

Hi Manu,

Ocrelizumab is a monoclonal antibody targeting B cells. I think the reason they are trying this is to knock out the EBV infected B cells. I've posted a bit on this under the heading Avonex and Valtrex. Are you allowed to ask them if that's the intention of the medication?

The Rebif is Interferon. As best as I can tell it will work best on EBV in its latent phase but not so well in the lytic phase. I use Valtrex for that phase and have had great success for over a decade doing this.

I supect they will have an inconclusive finding using just one approach on its own. Did they describe the possible side affects of the Ocrelizumab?

Regards

[minnesotajen]

Hi everyone

I'm in Minneapolis, MN, and I am also on the ocrelizumab/Rebif trial (OPERA). I had my first infusion/shot two weeks ago, and I'm going in for my second infusion on Wednesday (two days from now).

I'm pretty sure I got the ocrelizumab because I got through most of the infusion and then reacted dramatically: hives, itching inside my throat. They stopped the infusion, gave me more steroids/Benadryl, waited an hour, and then started again at half speed. They said I shouldn't react the same way the second time, but I really didn't mind so much; it means I probably got the real drug!

I haven't had any symptoms at all from my "Rebif" shots. I did get an infection though. I experienced dizziness, vertigo, and nausea starting last Wednesday, went in for labs on Friday, and learned today that I've got a low-grade infection. I'll be starting on antibiotics today. As far as I know, I'm still scheduled for my second infusion in two days; we'll see if my neurologist thinks any differently when I go in to see him before the infusion.

As far as my MS symptoms, I haven't noticed a significant lessening. As a matter of fact, I have had a few more issues with balance and double vision in the last week or so, though I think that may have been triggered by this infection. We'll see what happens.

Good luck everybody!

[vanlynn]

Hi Manu,

I just saw your post while I was doing some research on Ocrelizumab. I am 25 years old and was just diagnosed with MS 6 months ago. My doctor suggested and encouraged me to participate in the same trial study that you are currently undergoing, at home here in Canada. I am due to began my first infusion later this month.

I must say I feel in denial about my illness. I was diagnosed with it after I had a tingling (pins and needles feeling) in my hand. I initially though I had a pinched nerve but the sensation only faded; never disappeared. Several MRI scans after this incident did show reoccurring lesions in my brain confirming MS, however I have not experienced any other physical symptoms since.

It scares me to start this treatment, as it feels like I will be finally admitting to myself that I have MS. It really scares me when I think about my future, and what effect having MS will have on it. My grandmother had MS and although I only remember her vaguely I know she was immobilized and completely hospitalized by the time she was in her 60's. I know that the treatments we have today are much better then the limited resources available during her lifetime, which gives me hope, but I can't help being nervous and forlorn.

I hope that this treatment slows the progression of the disease for myself and EVERYONE else who has this illness! Good luck to everyone who is undergoing this treatment, and I will try to post here again after I have undergone my first infusion.

Cheers,
Vanessa

P.S. Has anyone changed there diet after being diagnosed? I was recommended that I restrict myself to an anti-inflammatory diet (gluten and dairy free with some other restrictions), which I am going to try very hard to stick too. I anyone has, has it made a difference??

[randomkristine]

Hello all!

I'm so glad I found this thread. I was diagnosed in 2001 and put on copaxone. I decided (stupidly) to go off it in 2007. In May of 2012 I started having serious relapse symptoms and started it up again. (I can't believe I just shrunk 11 years into 3 sentences!)

Anyhow, I'm about to sign the authorization the day after tomorrow to start this study. So nervous but I really think its a good decision. I REALLY hope I get the ocrelizumab!

I hope to see lots of good updates from everyone!

~ Kristine

[mavericco]

Hi my name is Peter and I'm 24. I live in Poland

In January 2011. I involved to GALA trial (twice dose of copaxone or placebo 3 times a week but I'm sure that were copaxone injections) Since september 2011 I had 6 relapses and I left copaxone and started Avonex NHS refunded. Fever in night and muscle pain next morning. Over 10 new lessions in MRI scan in relaps after 3 months in July 2012 so I left Avonex as well. On every relapses I received Medrol solu steroids and everything returned to almost normal ( I hate steroids side efects)

Two weeks ago i signed Opera trial. Roche Swiss
Yesterday I had infusion of steroids 1/10 of normal dose next two paracetamols 500mg, some anti-allergy tablet, injection rebif 2.4MIU/0.2ml or Placebo and infusion of Ocrelizumab or Placebo 2 h 30 mins, doctor been coming every 15 minutes and chacking temperature and blood pressure.No any changes.

Best regards and please write what's new with you

[Manu]

Glad to read you are all participating in this trial.
I am now in month 9 of the trial and I'm still feeling stable. he only thing that is annoying is my left eye that is slower than the other one.

We have to keep believing that participating in this trial will do good for us (since we are sitting in the first row to a possible solution for our disease) and for the other patients that are following us.

We are close to a possible solution !

Keep posting if you have any news


Regards

Manu