Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

New members should feel free to introduce themselves here

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

Postby Keisha » Fri Sep 28, 2012 8:35 pm

Hi Everyone, I just started the Opera study in Canada four weeks ago, I just finished my second dose of
Ocrelizumab/Rebif. I had a reaction of an itchy throat and ears during my first infusion. I was giving a antihistamine, after about 30 min it went away. After the first time I experienced bad headaches and a lot of dizziness, but it started to get better a week later. Now again After the second infusion, the dizziness and headaches continue. I have talked to my Drs and Nurses they say that it could be a possible side effect, but being that it is a "blind study"', they can't say for sure.Has anyone else had anything similar happen. I was so glad to find this site, with people who are having a similar experience.Iam a 37 year old mother of 2. I was diagnose 12 years ago and have tried most other meds...including being on Rebif for 9 years. my Neurologist asked me to trying this treatment as it seems all others are not working for me. So Iam keeping my fingers crossed that this trial is taking us all involved in a big step in the right direction!
Keisha
Newbie
 
Posts: 3
Joined: Fri Sep 28, 2012 3:49 pm

Advertisement

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

Postby Manu » Tue Nov 06, 2012 2:46 am

How are you doing Keisha ?

I am having the longest period without attacks at this time being....

Regards

Manu
Manu
Getting to Know You...
 
Posts: 21
Joined: Thu Jan 26, 2012 4:22 am
Location: Ruiselede Belgium

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

Postby Pesho » Sun Nov 11, 2012 12:59 pm

Keisha wrote:Hi Everyone, I just started the Opera study in Canada four weeks ago, I just finished my second dose of
Ocrelizumab/Rebif. I had a reaction of an itchy throat and ears during my first infusion. I was giving a antihistamine, after about 30 min it went away. After the first time I experienced bad headaches and a lot of dizziness, but it started to get better a week later. Now again After the second infusion, the dizziness and headaches continue. I have talked to my Drs and Nurses they say that it could be a possible side effect, but being that it is a "blind study"', they can't say for sure.Has anyone else had anything similar happen. I was so glad to find this site, with people who are having a similar experience.Iam a 37 year old mother of 2. I was diagnose 12 years ago and have tried most other meds...including being on Rebif for 9 years. my Neurologist asked me to trying this treatment as it seems all others are not working for me. So Iam keeping my fingers crossed that this trial is taking us all involved in a big step in the right direction!

Had the same itchy throat both times when having infusions. No side effects other than that, doing well on the Rebif/placebo also. Had some minor problems in the beginning, but doctors said that although that it might be placebo, there might be some compounds to mimic side effects of the real thing.
Pesho
Family Member
 
Posts: 78
Joined: Thu Feb 23, 2012 1:39 pm

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

Postby Keisha » Tue Nov 27, 2012 9:59 pm

I'm glad to hear that you are doing well Manu! it's been 2 months since my second infusion and I'm feeling fine. I am no better or worse than I was before the study...which is great!!I have had no side effects from the Rebif, after being on it for so many years prior to this and having strong side effect, I believe that it is the placebo, but I don't know for sure.
Keisha
Newbie
 
Posts: 3
Joined: Fri Sep 28, 2012 3:49 pm

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

Postby turuncun » Wed Dec 12, 2012 1:37 am

hı everyone

ı am usıng betaferon but ı had one another attack after usıng thıs drug and ı decıded to try another and fınd thıs trıal .my doctor called me today about the trıal to gıve me ınformatıon.ı have read all wrıtten (manu - keısha - pesho etc )and a lıttle exıted. can you tell your lately experıence about thıs trıal ?
turuncun
Newbie
 
Posts: 1
Joined: Wed Dec 12, 2012 1:12 am

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

Postby DianaJason » Thu Jan 03, 2013 12:19 pm

Hi all -

First time to this forum. Glad to have found you all. I am due for my next 6 month infusion for the Ocrelizumab/Rebif trial in February 2013. I am not sure which drug I am receiving but am having new symptoms I have never experienced before (including pain). I am curious if anyone else has experienced a worsening of MS symptoms right before their next infusion. Is it possible I am getting the ocrelizumab and it is wearing off? I was on the CombiRx (Copaxone/Avonex) trial for 3 years and did amazing while on it. These symptoms are a whole new arena for me.

Thanks!
Di
DianaJason
Newbie
 
Posts: 1
Joined: Thu Jan 03, 2013 11:45 am

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

Postby Chele » Mon Jan 07, 2013 6:23 pm

I am so glad to find you all! I have been in the study since August. My 6 month transfusion is Feb26. I think I'm on the Ocre. and rebif placebo. I have been on rebif for 11 years so I know it's effects. During my infusions my blood pressure dropped both times, after the second infusion I had pain for about 2 weeks(so bad that I went back to the neuro. to get checked out), then it went away and I've felt great with not any MS symptoms. Everyone keep us posted on your results.
Chele
Chele
Newbie
 
Posts: 1
Joined: Mon Jan 07, 2013 6:06 pm

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

Postby Manu » Wed Jan 09, 2013 12:47 am

Just to inform that I had my 3d infusion of Ocrelizumab/Placebo yesterdag. I got the info that the results of this study will be there on the end of 2014, beginning 2015.
I did well yesterday and hope that the attacks will stay out for the next 6 months (as they did in the last 6 months)

Regards,

Manu
Manu
Getting to Know You...
 
Posts: 21
Joined: Thu Jan 26, 2012 4:22 am
Location: Ruiselede Belgium

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

Postby Keisha » Sat Jan 12, 2013 9:56 am

Hi again, Iam waiting to go in February for my 600 mg infusion,excited to see what happens. As of now Iam feeling pretty much the way I was before the trial, fatigue, muscle pain and weakness, no change is fine with me.still no effects from the rebif.i hope that everyone is doing well with the meds.
Keisha
Newbie
 
Posts: 3
Joined: Fri Sep 28, 2012 3:49 pm

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

Postby Ellie2013 » Mon Jan 14, 2013 3:39 am

Hi everyone,

I'm thrilled to have found this forum.I have been asked to take part in this trial too, screening end of Jan. I'm 44 and an irish mum to 3 kids, my youngest has just started school.

After have a CIS in June which hospitalized me, I have been symptoms on and off for 5 months they diagnoses me with RRMS end of nov 2012 and suggested I should start disease modifying drugs. Then the suggestion of starting this trial.

All your comments have been really helpful almost reassuring that its worth it, as I haven't made a decision yet
Please keep posting,
I'll let you know my decision soon

After screening
I don't meet the strict criteria but best of luck to you all.
I'll be keeping an eye on this thread
Last edited by Ellie2013 on Tue Jan 29, 2013 9:45 am, edited 1 time in total.
Ellie2013
Newbie
 
Posts: 1
Joined: Mon Jan 14, 2013 3:25 am

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

Postby CESAR » Wed Jan 23, 2013 4:59 am

Estou participando da fase III dos testes com Ocrelizumab desde Dezembro 2012.
CESAR
Newbie
 
Posts: 7
Joined: Wed Jan 23, 2013 4:54 am

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

Postby 1978leandro » Fri Feb 01, 2013 1:39 pm

Hello everyone!

My name is Leandro Rogerio Silva (this is also my facebook), 34 years old, live in Brazil and discovered the AT in July 2012, when I lost my palate. Not felt flavors of anything or pepper, or sweet or salty!
Yes there Sclerosis Multipla in Brazil. Sure lower rate than in Europe.
Here are 18/100.000 people.
My taste returned after 49 days of corticosteroids Solumedrol (8 days x 1000mg).
5 months ago I apply the Rebif44 for 3 x week, and I'm sorry side effects, fever, night and the next day too.
I am swimming athlete amateur and not had any lesion motor, but I have fatigue and loss of strength.

Here in Brazil unaware trials with ocrelizumab.
Also do not know anyone who uses Tysabri.

Very good to know this site experiences and learn from you all.

Hugs and much health to all.


Leandro Rogerio Silva
Faith without Limits!
________________
Leandro Rogério Silva, 34. Married to the best wife who loves me and always motivates me.
Diagnosed July 10, 2012. Rebif44 since August 2012.
User avatar
1978leandro
Newbie
 
Posts: 6
Joined: Fri Feb 01, 2013 8:55 am

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

Postby lyndacarol » Fri Feb 01, 2013 6:09 pm

Welcome to ThisIsMS, Leandro. Keep active and exercising as much as possible – I believe that diet and exercise are more powerful in fighting MS than any drugs currently available.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
User avatar
lyndacarol
Family Elder
 
Posts: 2382
Joined: Thu Dec 22, 2005 3:00 pm

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

Postby Louweez64 » Sat Feb 02, 2013 8:40 pm

Hello, I am in the United states and I have been in the Opera study one year. I just had infusion January 31, so 2 days ago. I had some reactions with the 1st and 2nd infusions a year ago, headaches, itchy, flushing, etc. Only like I notice in infusions now is that I am worn out for several after. The past 6 months I have been relapse free for the first time in a long time, I have had a relapse every 3-4 months the last 2 years prior. Over all I have felt better. Obviously none of us know what we are getting, we can only go by reaction or side effects. I have had nothing from the "Rebif" injections, so I think they are placebo.

Louweez
Louweez64
Newbie
 
Posts: 3
Joined: Sat Feb 02, 2013 8:17 pm

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

Postby CESAR » Mon Feb 04, 2013 11:23 am

Hello, My name is Cesar, I live in Brazil.
I have MS for nearly 12 years. I'm in the phase III study OPERA. I started ocrelizumab infusions of last December. Previously took Copaxone every day, I am now using Rebif 3 times a week. I feel better and I had no adverse reactions.
Somebody is also using ocrelizumab? How are you feeling?

See you soon!!
CESAR
Newbie
 
Posts: 7
Joined: Wed Jan 23, 2013 4:54 am

PreviousNext

Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service