Last reply 1 month ago
Ocrevus users…

Hi,

I’m due to start my first treatment of Ocrevus next Thursday. My neurologist said that afterwards I should be fine and can drive home, go to work the next day, carry on as normal.

Is that what other people have found after their first treatment of Ocrevus?

Basically, I just need to know if I should get someone to take me home afterwards!
Thanks x

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nessieb73
5 months ago

Haha. I guess no-one uses Ocrevus! 😆
I’ll plan to drive and hope that I feel ok afterwards x


stumbler
5 months ago

@nessieb73 , It’s a shame that you haven’t had a response.

I know that Ocrevus is a new DMT, which isn’t approved everywhere. But, we do have 70 members, who have shared their treatments.

You could try using the “Connect” button and searching for people with “Ocrevus” as their treatment option. You could then send Friend Requests, followed by Personal Message, and try to get answers that way.

The search under the “Connect” button will display members, sorted by most recently active.


dekkor
5 months ago

Hello @nessieb73,

That sounds about right.

I’m scheduled for my second half infusion this Tuesday. I can confirm that I was able to drive afterwards but I chose to take a taxi. The infusion may include Benadryl which could make you sleepy. I found that this wore off by the time the infusion was done.

I wasn’t sure how I’d be the next day so I worked from home just in case. In hindsight I would have been ok to to go to the office the next day.

People seem to have quite varied side effects with Ocrevus. If you’re interested, there’s an active Ocrevus support group on Facebook: https://facebook.com/groups/653313891487070


Anonymous
5 months ago

Hi, I didn’t know it was licensed in the UK, is it? From what I read online it isn’t yet licensed in the UK but there is a single arm trial (multicentre) in the UK of Ocrevus, so all participants get the medication.

“This is a prospective, multicenter, open-label, single-arm, phase 3b study which evaluates effectiveness and safety of ocrelizumab in participants with early stage RRMS. The study will consist of an open-label treatment period of 192 weeks and follow-up period of at least 48 weeks.”

Study to Evaluate the Effectiveness and Safety of Ocrelizumab in Participants With Early Stage Relapsing Remitting Multiple Sclerosis (RRMS)

https://www.ukctg.nihr.ac.uk


vixen
5 months ago

Hi there, last week NICE have proposed that access for RRMS patients is declined in the UK, although it’s going for consultation, whatever that means. I’m gonna write to my local MP, for all the good that will do as I’m very disappointment. A decision for PPMS will be made later in the year


nessieb73
5 months ago

Thanks everyone x
I’m over in Perth, WA and it’s been just approved here for both RRMS and PPMS (beginning of Feb I think).
@dekkor thanks for the Facebook link. I’ll check it out
Have a great day everyone!


Anonymous
5 months ago

It seems the Ocrevus trial is for first line RRMS only as it excludes those who have taken a DMT before.

The UK early-stage RRMS Ocrevus trial is recruiting currently, inclusion and exclusion criteria are the following:

Gender All
Age Range 18 Years – 55 Years
Who Can Participate Patients
Number of Participants
600
Participant Inclusion Criteria
Inclusion Criteria:

– Have a definite diagnosis of RRMS, as per the revised McDonald 2010 criteria

– Have a length of disease duration, from first documented clinical attack consistent with MS disease of less than or equal to (
– Within the last 12 months one or more clinically reported relapse(s) or one or more signs of MRI activity

– EDSS of 0.0 to 3.5 inclusive, at screening

– An agreement to use an acceptable birth control method for women of childbearing potential, during the treatment period and for at least 6 months after the last dose of study drug

Exclusion Criteria:

– Secondary progressive multiple sclerosis or history of primary progressive or progressive relapsing MS

– Inability to complete an MRI

– Known presence of other neurological disorders

Exclusions Related to General Health:

– Pregnancy or lactation

– Any concomitant disease that may require chronic treatment with systemic corticosteroids or immunosuppressants during the course of the study

– History or currently active primary or secondary immunodeficiency

– Lack of peripheral venous access

– History of severe allergic or anaphylactic reactions to humanized or murine monoclonal antibodies

– Significant or uncontrolled somatic disease or any other significant disease that may preclude participant from participating in the study

– Congestive heart failure (New York Heart Association III or IV functional severity)

– Known active bacterial, viral, fungal, mycobacterial infection or other infection, (excluding fungal infection of nail beds) or any major episode of infection requiring hospitalization or treatment with IV antibiotics within 4 weeks prior to screening or oral antibiotics 2 weeks prior to screening

– History of malignancy, major opportunistic infections, alcohol or drug abuse, recurrent or chronic infection, and/or coagulation disorders

Exclusions Related to Medications:

– Received any prior approved disease modifying treatment (DMT) with a label for MS, for example, interferons, glatiramer acetate, natalizumab, alemtuzumab, daclizumab, fingolimod, teiflunomide and dimethylfumarate

– Receipt of a live vaccine or attenuated live vaccine within 6 weeks prior to the baseline visit

– Previous treatment with B-cell targeted therapies (i.e., rituximab, ocrelizumab, atacicept, belimumab, or ofatumumab)

– Any previous treatment with immunosuppressants/ immunomodulators/ antineoplastic therapies (cyclophosphamide, azathioprine, mycophenolate mofetil, cyclosporine, methotrexate, cladribine, mitoxantrone, laquinimod, total body irradiation, or bone marrow transplantation)

– Treatment with investigational DMT

– Treatment with fampridine/dalfamipridine unless on stable dose for >/=30 days prior to screening
Participant Exclusion Criteria
This is in the inclusion criteria above


esue
5 months ago

As several others have mentioned, your biggest issue may be with the Benadryl favor. I had some of the mild infusion reactions with my first one today, so I required a second batch of Benadryl mid-infusion. Not a big deal as far as the infusion goes, but the additional boost definitely left me way too drowsy to safely drive after. It may just put you at ease to not have to worry about it and arrange a ride!


leighlincoln
1 month ago

Hi Nessie

I’m also an expat living in Australia (Queensland) I started Ocrevus in April and apart from fatigue after 1st 2 half doses I feel fine. In fact, I feel much more alert than I have for years.

The thought of Ocrevus frightened me at first but having tried Avonex and Tecfedira I thought nothing ventured nothing gained.
I found the procedure painless but time took a long time as they had to do things like steroids and antibiotics through the canula first.

Husband drove me there and back as I’m no longer allowed to drive as I have Ataxia. Bit of a pain really as I feel I’ve lost my independence. I’ve progressed to a wallker which is a geat help.

Hope you going fine, message me if you want.

Regards

Pat

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