I also am living with RRMS and it sucks. I got diagnosed when I was 39 and I've been getting infusions for the past 4 years. I started with TYSABRI But had a blood test and I was JCV positive so I can no longer take it. I'm now also on OCREVUS . I'VE HAD THREE INFUSIONS SO FAR. I've honestly not noticed any difference so far. You are lucky that you're able to walk the way that you walk and stand the way that you stand. Don't take it for granted. That's all I want back is my walking and my balance. I can deal with the fatigue. Thanks for sharing your day and stay strong. MS warrior from the USA here
Hi thanks for sharing. I've been on Ocrevus for a few years. My Ocrevus infusion tomorrow and annual MRI's in 2 weeks. Fair well on your personal journey and good luck.
Thank you so much for this video! I have my first treatment today and have been so nervous about it. This made me feel so comfortable just knowing what someone’s experience is and feel normal about having hospital PTSD/anxiety from how many times I’ve had to go from MS
Thank you for this video I got diagnosed March 15 of this year. I’ve been trying to figure out how to go about any medication or going holistic. You just helped me decide I’m going to try ocervus.
Thank you for watching, Laura. We have some more information on our website here: pulse.ly/5fxmxwadet Sending you best wishes for your infusion. Nick, the MS Trust.
My neurologist wanted to start me in it, but I have to keep on taking medication until she gets all the paperwork or whatever you call it. Hopefully it'll work for me.
Thank you. I start Ocrevus next Thursday I’ve had ms for 18 years. Did Copaxone and Rebif Plasma pherisis in 09 the Tysabri, which I had anaphalatic shock from so cannot take that. My MS is SPMS so they decided on this New treatment. I adore my Hematologist who is directing infusion. So I fell in in good hands. But I need to know what to take, so thank you. And good luck!
It’s worth it though for me! I call it my miracle juice! I just had 3 strokes in the last month and now my Ocrevus has to be spaced out a month, which now changes my infusion to December. Grrrr
Hi Xiaoyun, It might be worth keeping in mind that you may feel a little more tired possibly than normal after your infusion and to let your employers know that you may need some time to rest after it. Everybody is different however, so you may well feel fine. It might be worth leaving some extra time to rest after your first one to see how you feel then you might be able to tell in the future how you react and whether you need to take time off after it too. I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk
Hi thank you for the video. I’ve been on the self injections and my recent mri shows nee lesions so they want to escalate my treatment ocrevus is one of the options I’ve been given but there’s a delay with it I’m really scared I have two kids and can’t afford to be in hospital for so many hours plus the symptoms after 😬 what scares me even more is the risks of catching other illnesses after having ocrevus treatment I’m Wally confused as to what to do
Hi Nafisa, sorry to hear you are having a difficult time at the moment. Please contact our helpline service on 0800 032 38 39 or email them at ask@mstrust.org.uk they will be able to help talk you through your treatment options and signpost you to places that can support you. Many thanks Sue
Hi I am actually afraid of starting Ocrevus because I had glatimer acetate I had a bad reaction to it after using it for some months and then I started vumerity and I wasn't feeling okay with this one too and now the neuro suggested I start Ocrevus and I am nervous to start a new medication. Another thing is I want to know if I can take vumerity again or do doctors want their patients move on to new medications if one does not work?
Hello and thanks for your message! It's perfectly understandable that you're feeling nervous starting a new medication when you have struggled with others and their side effects previously. We have an page on Ocrevus on our website that you can read more about here which also includes a video diary of an infusion too: mstrust.org.uk/a-z/ocrevus-ocrelizumab Common side effects of Ocrevus include: infusion related reactions such as headache, rashes, fever and nausea. Many people treated with Ocrevus experience these reactions, but they are generally mild to moderate and short-lived. To minimise infusion reactions, you may be given additional medications before infusions, and be monitored closely during the infusion. You may need to change drugs if you have continued to experience relapses, if your brain scans show that your MS is silently active or if you are experiencing persistent and unmanageable side effects. If you do not feel the treatment is effective or you are struggling with side effects then you can stop the treatment. This should only be done following discussion with your MS team, as some drugs need to be reduced gradually to avoid problems. Your MS team may be able to suggest an alternative drug you may wish to try rather than stopping treatment altogether. It might be worth speaking to your MS nurse or neurologist regarding trying Vumerity again as they will inform you of whether this would be possible to go back to one you have previously tried. You can read more here: mstrust.org.uk/about-ms/ms-treatments/ms-decisions/frequently-asked-questions-faqs I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk
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Taking the infusion too. Thank you. It makes me feel not alone. God bless. I got MS when I was 65
I was diagnosed at 67 but I had it a long long time. Starting ocrevus on May 23 2023. How are you doing?❤
I also am living with RRMS and it sucks. I got diagnosed when I was 39 and I've been getting infusions for the past 4 years. I started with TYSABRI But had a blood test and I was JCV positive so I can no longer take it. I'm now also on OCREVUS . I'VE HAD THREE INFUSIONS SO FAR. I've honestly not noticed any difference so far. You are lucky that you're able to walk the way that you walk and stand the way that you stand. Don't take it for granted. That's all I want back is my walking and my balance. I can deal with the fatigue. Thanks for sharing your day and stay strong. MS warrior from the USA here
Hi thanks for sharing. I've been on Ocrevus for a few years. My Ocrevus infusion tomorrow and annual MRI's in 2 weeks. Fair well on your personal journey and good luck.
💙💙💙
Thank you for making this video. i am very nervous to start treatment. But this gives great insight as what to expect. We got this!!!!!
Thank you so much for this video! I have my first treatment today and have been so nervous about it. This made me feel so comfortable just knowing what someone’s experience is and feel normal about having hospital PTSD/anxiety from how many times I’ve had to go from MS
Hi Allison,
Thank you so much for your kind comments. We're glad that Marissa's experience has helped you in our own treatment journey. 💙
Thank you Marissa! That's was perfect info!
💙
Thank you for this video I got diagnosed March 15 of this year. I’ve been trying to figure out how to go about any medication or going holistic. You just helped me decide I’m going to try ocervus.
Truly a great video, I had mine just the other day, it was probably my fifth or sixth? Very nice video, thank you
Thank you so much for watching. I'm glad that Marissa's treatment journey was helpful for you. 💙
Thankyou so much for this video. I start ocrevas in August and I've been dreading it. This has helped me loads. X
Bless you I’ve had diagnosed ms since 2002. I’m 54
Thanks for sharing my first infusion is Monday and I'm so scared
Thank you for watching, Laura. We have some more information on our website here: pulse.ly/5fxmxwadet
Sending you best wishes for your infusion.
Nick, the MS Trust.
My neurologist wanted to start me in it, but I have to keep on taking medication until she gets all the paperwork or whatever you call it. Hopefully it'll work for me.
Thank you for sharing. Wishing you all the best on your treatment journey. 💙
Thank you. I start Ocrevus next Thursday I’ve had ms for 18 years. Did Copaxone and Rebif Plasma pherisis in 09 the Tysabri, which I had anaphalatic shock from so cannot take that. My MS is SPMS so they decided on this New treatment. I adore my Hematologist who is directing infusion. So I fell in in good hands. But I need to know what to take, so thank you. And good luck!
It’s worth it though for me! I call it my miracle juice! I just had 3 strokes in the last month and now my Ocrevus has to be spaced out a month, which now changes my infusion to December. Grrrr
I have primary progressive MS. I've been on Ocrevus for going on 2 years...
Iv got my first infusion on the 6th of June this year shitting a brick ngl 😳
Did u do a transition from a different infusion to ocrevus ?
How long it take the first one When they give yiu
She still alive? What was her side effects if any ?
Well, Monday is infusion 3 time! here we go again!
My doctor never gave me a choice and pit me on tecfidera and i absolutely hate it ,thinking about ocervus
Thank you for sharing your experiences. Sending you best wishes on your treatment journey 💙
Hi everyone I am just wondering if the infusion will affect my normal work？ Do I need more time to have a rest
Hi Xiaoyun, It might be worth keeping in mind that you may feel a little more tired possibly than normal after your infusion and to let your employers know that you may need some time to rest after it. Everybody is different however, so you may well feel fine. It might be worth leaving some extra time to rest after your first one to see how you feel then you might be able to tell in the future how you react and whether you need to take time off after it too.
I do hope this information is helpful for you.
Take care, Corinne, MS Trust Enquiry Service
0800 032 3839 / ask@mstrust.org.uk
@@mstrust Thank you so much.
And I'm only 38 I got diagnosed last year 2022.
Hi thank you for the video. I’ve been on the self injections and my recent mri shows nee lesions so they want to escalate my treatment ocrevus is one of the options I’ve been given but there’s a delay with it I’m really scared I have two kids and can’t afford to be in hospital for so many hours plus the symptoms after 😬 what scares me even more is the risks of catching other illnesses after having ocrevus treatment I’m Wally confused as to what to do
Hi Nafisa, sorry to hear you are having a difficult time at the moment. Please contact our helpline service on 0800 032 38 39 or email them at ask@mstrust.org.uk they will be able to help talk you through your treatment options and signpost you to places that can support you. Many thanks Sue
Will be my first DMT since 2015
Hi I am actually afraid of starting Ocrevus because I had glatimer acetate I had a bad reaction to it after using it for some months and then I started vumerity and I wasn't feeling okay with this one too and now the neuro suggested I start Ocrevus and I am nervous to start a new medication. Another thing is I want to know if I can take vumerity again or do doctors want their patients move on to new medications if one does not work?
Hello and thanks for your message! It's perfectly understandable that you're feeling nervous starting a new medication when you have struggled with others and their side effects previously. We have an page on Ocrevus on our website that you can read more about here which also includes a video diary of an infusion too: mstrust.org.uk/a-z/ocrevus-ocrelizumab
Common side effects of Ocrevus include: infusion related reactions such as headache, rashes, fever and nausea.
Many people treated with Ocrevus experience these reactions, but they are generally mild to moderate and short-lived. To minimise infusion reactions, you may be given additional medications before infusions, and be monitored closely during the infusion.
You may need to change drugs if you have continued to experience relapses, if your brain scans show that your MS is silently active or if you are experiencing persistent and unmanageable side effects. If you do not feel the treatment is effective or you are struggling with side effects then you can stop the treatment. This should only be done following discussion with your MS team, as some drugs need to be reduced gradually to avoid problems. Your MS team may be able to suggest an alternative drug you may wish to try rather than stopping treatment altogether.
It might be worth speaking to your MS nurse or neurologist regarding trying Vumerity again as they will inform you of whether this would be possible to go back to one you have previously tried. You can read more here: mstrust.org.uk/about-ms/ms-treatments/ms-decisions/frequently-asked-questions-faqs
I do hope this information is helpful for you.
Take care, Corinne, MS Trust Enquiry Service
0800 032 3839 / ask@mstrust.org.uk
How is Marisa today
Russia for sharing
No time line