Belgium, 9 months after diagnose. trial ocrelizumab/Rebif

[centenarian100]

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"

Hmm...interesting. The "nocebo" effect.

discussion by one Dr. Here: http://host.madison.com/news/local/ask/ ... 963f4.html

[NHE]

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"

Hmm...interesting. The "nocebo" effect.

discussion by one Dr. Here: http://host.madison.com/news/local/ask/ ... 963f4.html

That sounds more like the power of suggestion to me.

Researcher: "Did you experience any flu like side effects?"

Patient: "Well, maybe. I felt a little off. Sure, why don't we call it flu like."

Utter nonsense. My first Avonex injection incapacitated me for 24 hours with the worst fever I have ever had. At one point all I could do was lie on my bed with an ice pack on my head and watch the color blobs float around on the ceiling. While things improved somewhat over time, I continued to have bad side effects typical of Ifn-B for about 18 months which included fevers, chills, shakes (sometimes so bad I could barely walk), muscle spasms, and what I call "mash potato brain" the day afterwards just to name a few. Nocebo? No chance.

[centenarian100]

That sounds more like the power of suggestion to me.

Researcher: "Did you experience any flu like side effects?"

Patient: "Well, maybe. I felt a little off. Sure, why don't we call it flu like."

Utter nonsense. My first Avonex injection incapacitated me for 24 hours with the worst fever I have ever had. At one point all I could do was lie on my bed with an ice pack on my head and watch the color blobs float around on the ceiling. While things improved somewhat over time, I continued to have bad side effects typical of Ifn-B for about 18 months which included fevers, chills, shakes (sometimes so bad I could barely walk), muscle spasms, and what I call "mash potato brain" the day afterwards just to name a few. Nocebo? No chance.

Good point-could be simply the power of suggestion.

[Pesho]

I've red some reports for the Ocrelizumab trials yesterday. They mention that there is not a single active lesion in the patients on the drug, and very few relapses. Let's hope that it is all true .

[CESAR]

I had a very strong surge in recent days. Pain and weakness in the left side of the body, especially in the leg. Did infusions of corticosteroids for the first time after starting to use the Ocrilizumab. In early June I will make the second infusion Ocrilizumab, hope not to have many side effects.

hugs


CÉSAR

[pdonepudi]

I am Pradeep Donepudi 43 years old Diagnosed with RRMS in 2002 in US and took rebif treatment since then till 2010.I went back to India and stopped everything. I am fine with no major new symptoms. I returned to US last month and came to know about Iranian herbal drug. After coming back I feel weakness, stiffness, balance and wobbling in my legs. I want to try that medicine along with Rebif or heard that another oral pill for MS approved by FDA. Still I am going to work with help of friends and working fine with no issues. Glad to know about this forum to share my hapiness and read others sailing in same boat.
Anybody who knows please let me know name of iranian drug where to buy it online?

Thanks
Pradeep

[Pesho]

I've red some reports for the Ocrelizumab trials yesterday. They mention that there is not a single active lesion in the patients on the drug, and very few relapses. Let's hope that it is all true .

Well, I might be wrong. I feel my left leg а bit numb:(. Going for a check in the morning, hope I did something while working out, rather than a relapse.

[Manu]

Hi,

Don't have a lot of time to write, but will do so within 2 weeks.

Just to inform I finished the study of Ocrelizumab and will be starting with the
Open Label study in january where I will get the Ocrelizumab for 100% sure.

I'll inform you but know that I am feeling good.

Manu

[grandsons4]

From Wikipedia: Ocrelizumab targets mature B lymphocytes[1] and hence is an immunosuppressive drug candidate. It is under development by Hoffmann–La Roche's subsidiary Genentech, and Biogen Idec.
It had reached Phase III clinical trials for rheumatoid arthritis[2] and lupus erythematosus, and Phase II for multiple sclerosis and hematological cancer.
In March 2010, Roche announced the suspension of clinical trials in rheumatoid arthritis and lupus erythematosus. This step followed excess deaths due to opportunistic infections. Development for multiple sclerosis continues.
Question: Would not pwMS be subject to same opportunistic infections?
http://en.wikipedia.org/wiki/Ocrelizumab

[Manu]

I finished the study and tomorrow I will be getting 100% sure the OCRELIZUMAB. I will keep you all posted.

Best Regards

Manu

[CESAR]

Glad Manu, please keep us informed.

How long were you in the study?

How are you feeling?

I started 14 months ago.

Hugs ...

[Pesho]

I've red some reports for the Ocrelizumab trials yesterday. They mention that there is not a single active lesion in the patients on the drug, and very few relapses. Let's hope that it is all true .

Well, I might be wrong. I feel my left leg а bit numb:(. Going for a check in the morning, hope I did something while working out, rather than a relapse.

Unfortunately I got an relapse at the end. In October problems with one eye following objects and lagging behind the other . I was the only one in the test group here that had a relapse and I was in best shape, doctors were shocked. Fortunately I got restored on 100% from what I and the doctors can see.
Another thing is that I'm constantly sick since then and I think that a cold let to the relapse. Anyone else having problems with a lot of colds and so on while in the trial? It is almost 3 months now that I either cough, have temperature, feel generally bad, sour throat. I'm going over a second round of antibiotics now and it is not helping at all, even got temperature this evening?!? Anyone else having similar problems?
My trial should be over in February and after that I might go in the open label trial if I get accepted. But if I continue to get sick like this I'm not sure I would like to participate.

[LadyDi]

Hello -

This is my first time to this site and was glad to see others in the ocrelizumab trial. I just started the open label portion. I never really knew if I was on rebif or ocrelizumab previously but I know I didn't have any reactions to the infusions in the previous stage of the trial. Now that I am definitely receiving ocrelizumab I feel horrible. I have abdominal pains, pain in my lower back/upper buttocks, change in bowels, chronic dry cough, fungal skin infections, tight chest, intermittent and unpredictable low grade fever, headaches, teeth and jaw pain, and more. It is hard now to distinguish which is the health problem and which is my MS reacting to it. I feel I am having an allergic reaction which the Dr.'s say is possible however, they have tested me with xrays, ultrasounds and colonoscopies of which they are telling them nothing. Seeing a dermatologist this week for the rashes. I am so worried that in ruling out what it is not, I am getting worse. If I had to guess, I think the fungal infection is in my lungs. Anyone else having allergic reactions?

[CESAR]

Hello ,

I'll start the opening phase in October. I do not know if I'm injecting rebif or ocrelizumab yet, but for now I'm not with no adverse reactions . I'm eager to know which of the medications I am using .

Hug ...

[Pearly]

Hello!
This is the first time I use this forum. I'm really glad to have found this site!
I come from France.
To sum up I had avonex but I had some cognitive problems and I stopped it. Then it was copaxone. I had no luck I was among the 0,01% people to have voltage drop.
I started to participate in the opera II (I'm not sure) Rebif and Ocrelizumab trial 2 years and a half ago.
The first three months it was ok no side effects. Then, when the docs decided to increase the rebif I started to have the flu symptoma and I knew I got rebif.
Yesterday I began the extended open part and I had my first infusion of ocrelizumab. I felt headeaches and dizzyness.
Today I'm feeling exhausted and a bit of headeache. I hope it will get better in a few days.
I'm the last person in the world to take part in the extension so sorry you will have 2 years to wait to finish the trials