Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

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Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

Postby Manu » Fri Jan 27, 2012 5:42 am

Hi everyone,

I am living in Belgium, europe.

Since april 2011, I have the diagnose of M.S.

I started in the study of phase III ocrelizumab vs Rebif.

This could be interesting for some of you I think, keeping you posted with my experiences.
In which subforum I can place my upcoming story ?

Thnx
Manu
Last edited by Manu on Mon Jan 30, 2012 4:03 am, edited 1 time in total.
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Re: Belgium, 9 months after diagnose

Postby LR1234 » Sun Jan 29, 2012 4:38 am

Welcome Manu!! Please keep us updated on the trial....I hope it works for you x
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Froggie » Mon Jan 30, 2012 9:25 pm

Hello Manu! What part of Belgium are you from? My father is from Brussels and a lot of my family is from Liege. There is also some Flemish in the mix, but I don't know exactly from which city/town. How common is MS in Belgium? I'm curious about a possible genetic link. I was diagnosed in 2009, but know of no other family members with it. At least none that have talked about it.

Good luck with the trial. Hope that yields good results for you.
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Manu » Mon Feb 06, 2012 7:12 am

HI Froggie,

I am living close to Bruges. And I think M.S. is pretty common here in Belgium.

I am starting the 96-weeks trial tomorrow, and am pretty nervous about it. :?

At least I feel good that we are DOING something instead of undergoing.

Ill keep you updated about the situation.

Best Regards
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Froggie » Tue Feb 07, 2012 9:34 pm

Hello Manu,

Thank you for your response. I will explore a bit further the demographics of MS in Belgium. Did you have symptoms before your "official" diagnosis or was it sudden? It turns out I've had symptoms for years, though no one picked up on them.

Bruges and that area is quite beautiful from what I remember; it's been a number of years since I visited there. I hope you are still mobile and can enjoy walking the city. I would likely have an interesting time these days, as I'm stumbly even on flat sidewalks!

Bon chance (or Veel geluk?) with the trial. I admire your courage!
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Manu » Wed Feb 08, 2012 4:43 am

Hi there,

Yesteday was a busy day with a lot of tests (walking and coordination) and got the drugs.

I don't know (the trial is blindend) if I got Rebif or Ocreluzimab.

But

I feel no side-effects. As a matter of fact I feel better in my fingers. (I even type better) and the tingling in my legs are also better.

Will keep the updates here.

Talk to ya soon

Manu
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby LR1234 » Wed Feb 08, 2012 7:43 am

Is there a placebo as well as rebif/Ocrelizumab?

Rebif you probably would have got flu symptoms from but no side effects could suggest placebo??? (unless of course the new drug has gone into your system without a side effect)

Keep us posted
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Manu » Wed Feb 08, 2012 1:08 pm

There are only 2 possibilities :

or you get the rebif and the placebo ocreluzimab

or you get the placebo rebif and the ocreluzimab


I had no flu symptoms so far.

Pretty exciting....


Best regards
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Froggie » Wed Feb 08, 2012 9:30 pm

That's fantastic about no flu-like symptoms! I've been on Rebif for almost two years and have tolerated it well for the most part. I had some problems in the beginning when I was titrated up to 44mcg from 22mcg. I could not get warm post injection and felt lousy the next day. Ibuprofen and staying well hydrated has helped a lot.

Keep feeling better! Looking forward to hearing your progress.
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby RedPenguins » Sat Mar 03, 2012 9:08 pm

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 :)
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby NHE » Sat Mar 03, 2012 10:07 pm

RedPenguins wrote: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!


This "taste test" might not produce meaningful information. The Rebif dose is a very small amount of protein in a relatively large amount of buffer solution. If the buffer solution is identical between the placebo and the treatment Rebif, then the taste would be indistinguishable. If the Rebif placebo was saline instead, then both would probably taste salty. Since you don't have both available and don't know which one is which, it would still be rather difficult to figure it out. Still, a lot of people get pretty bad side effects in response to Ifn-B and if they're not giving you any ibuprofen or something else to supress them, then it can be pretty easy to figure out which is which.

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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Pesho » Tue Mar 20, 2012 10:32 am

Hello all,
I might be starting ocrelizumab trial in the next month. I'm still waiting for a call from the hospital, and I'm a little confused. Another doctor offered me another trial with Copaxon I think, or Campath, not sure and I know they are not the same by a long shot. Just wondering if anyone else has experience with the drug, what to expect and so on. I'm new to the game, didn't have any medication yet and I don't know what to expect.
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby LR1234 » Thu Mar 22, 2012 1:32 pm

Hey Keri,
So good to see you on TIMS again....You were in the revimmune trial right? I guess it was not that successful:(
I hope this med works better for you x
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Pesho » Fri Mar 30, 2012 3:05 pm

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.
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Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Postby Manu » Wed Apr 04, 2012 12:33 pm

Hi all,

Have been now in the trial since 7/2/12, so good so far. I have totally no side-reaction to the Rebif/placebo.

But last week I had an attack on my right eye and difficulties to walk. So I went into the hospital to get the Coritisone (Medrol), to block the infection.

I'm still not feeling perfect, have no taste in my tongue and feeling dizzy. I am seeing my doctor tomorrow. Fingers crossed.

Honestly, I was feeling super in the first 2 months of the trial, I hope this superman feeling returns.

talk to you all soon

Manu
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