Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

[Louweez64]

Hello Cesar,
Over all I feel well. I had a fairly serious MS relapse last June and have not recovered my strength back, but I am hopeful to regain it. Yesterday I started attending a water exercise class. I was quite worn out and achy last night but I am hopeful this will help me to become strong.

How are you feeling? Do you have any indications which medication you are receiving?

Louweez

[CESAR]

Hi Louweez

Where do you live?
I'm also feeling better. I lacked strength in the left side of my body and paresthesias also now apparently is slowly improving.
I always took Copaxone, now I'm using the drugs Rebif or Ocrelizumab (one is placebo). I'm participating in the final phase of research on the drug called Ocrelizumab that must end in 2015.

Hug!!

[Louweez64]

I am in the United States. I was also taking Copaxone before I began the Phase 3 trial of the Ocrelizumab or Rebif. My exam was improved with my doctor, compared to the last. Overall I am very satisfied with the results I have had.

[Pesho]

Does anyone have signs of weak immune system? I'm getting colds all winter, my throat hurts a lot. Took a total of 6-7 days sick leave, maybe a week more paid leave. Before that I was fairy healthy, could have temperature for 1 day, but nothing like this winter .

[jackthetab]

Hello world,

This is my first post.

I am also in the Ocrelizumab trial. I started the first infusion on October 1st 2012 and have just received my third infusion less than a week ago.

So far, the cloudiness of my vision has resolved itself and my MRI has shown a decrease in the size of the lesions on the brain. That is good news, however, physically my fatigue continues to increase. The doctor offered suggestions of Provigil or Adderral to help with this, but at this time, I am declining.

Since it is early in the study, only time will tell.

jackthetab

[CESAR]

Welcome.

I also feel physically very tired and weak. But go ahead, might improve with time.

César

[jackthetab]

Excerpt from my third infusion -

March 25th 2013 – Had my infusion today. This is the third infusion and with the increase to 600 mgs. Blood pressure and pulse were elevated throughout my time there and they seemed to increase slightly. The hardest part about this process is sitting for so long (7:45 am - 4:30 pm). Receiving the 25 mgs of Benedryl makes me want to sleep within minutes of the injection, but I am afraid of snoring in front of the others in the room so I do not sleep. The increase in my blood pressure (130/93) and pulse rate (pulse was as high as 104) makes me think that the placebo is the Rebiff and that I am really getting the Ocrelizumab. There are no side effects from the Rebiff injections and none since starting the injections in October 2012. Prior to leaving the office It was reported that the lesions have decreased in size in my brain based on the results of the MRI (and compared to the results from the MRI in September 2012). I did take my Rebiff injection once I got home, around 5:30 or 6:00 pm. I was sore with leg and ankle cramps and had a hard time falling asleep even though I felt physically and mentally exhausted. The cramps were more on the left side of my body and concentrated on the hip, lower leg and ankle. I did take 600 mgs of Ibuprofen with no real relief. Eventually my exhaustion overcame me and I slept. Physically I continue to struggle with fatigue and sometimes this is pretty extreme. I am able to work with no problems and 12 ounces of coffee in the morning does help. Once I get home from work, around 5:00 pm all I want to do is lay down in bed. If I do, I could sleep for hours. So, normally, the bedroom is avoided until bed time. There are no real issues with standing or walking. I still can walk miles, but getting back on my mountain bike seems futile. Sometimes I get fatigued when doing something repetitively ie pedaling a bicycle or even putting lotion on my arms. There are some continued problems with dizziness. I was prescribed Amitryptaline 20 mgs which helped in the beginning, but the dizziness has come back. This is mainly when I am attempting to lay down or looking straight up. For the time being, it is something that is tolerable. Lastly, my memory seems to be poor. The best way to describe this is “out of sight, out of mind”. If I am not looking right at something such as my cell phone, my cup of coffee, my vitamins etc, they are easily forgotten. Even writing something down is of no use, because I forget to look at what I have written.

jackthetab

[Pesho]

Had also my third infusion last week. I have no side effects neither from Ocrelizumab or Rebif, this time on the infusion I just sweated a bit for 5 minutes and that was it. No active lesions on all my scans, just can't make a comparison. Here I'm not supposed to the MRI results, just the technician in the MRI told me that there is no activity. Also, the doctors mentioned that they don't have a single relapse in the whole test group and there are some individuals like me that don't have side effects from nothing, while others are with typical rebif symptoms. Still, not a treatment, hope to get HSCT by the end of the year.

[Manu]

Hi,

Glad to read so many participants are here to share their info.

I am on to week 60. Had to do some tests this week.

And I am experiencing better feelings in my hands and my legs. Weird but extremely good I think.

Talk to all later

Bye

Manu

[Pesho]

Well,

After my last infusion I don't feel that good . My legs get tired more easy and I get cramps. I generally walk very, very fast, even now. And it starts to be hard to keep this speed. The muscles under my knee get hard as a rock, as I have ran 5 miles.... 30 second brake and I'm ready to go, but still.... Because of the pain in my knees I don't do sports now at all. So I gained some weight and that is making this even harder . Going to call my neurologist next week, something is wrong. They are making MRI's only of my brain, while I had lesions in my spine also. Is it possible that I have active lesions in the spine and no active in the brain itself, because the last MRI is clean of activity?

[Manu]

Pesho,

If we are honest with ourselves, we don't know weither we get the ocre or the rebif.... So keep hanging in there and believe in the trial !!

Good luck

Manu

[Pesho]

Hi Manu,

Doctors believe that I'm on Ocrelizumab. Other participants in the trial show clear signs of rebif side effects, or I'm just one of the few without any problems with Rebif. Last thing I heard is that the trial will be extended with two more years I just hope that I will have HSCT before that.

Good luck too

Peter.

[centenarian100]

haha. I love how the attempted blinding in this trial is a misreable failure.

[NHE]

haha. I love how the attempted blinding in this trial is a misreable failure.

It's a problem with any trial using Ifn-B since its side effects are so easily recognized.

[CureOrBust]

I remember talking to a research assistant about a trial a few years back where they were using Rebif as well as a saline placebo arm, and when I baulked at the fact that anyone on Rebif would know straight away as compared to saline, she sincerely said I would be surprised how many people on the saline arm on previous trials she was part of, complained of "flu like symptoms"

But still I find it hard to believe in any true blinding when there are so many known symptoms.