Hi all, I am 35 and just been diagnosed based on MRI and tingling in my left arm. Lots of lesions on brain and spinal cord. Does anyone have experience with this drug? Side effects? Positive stories? Thanks it’s all been so overwhelming.
Hey,
I recently started Ocreveus in December Ive had a pretty ok time so far during my first half dose I had a slight hot flush for about 30 mins but other than that was ok. Just its a long day during your first time since they are going to put you on the low rate of dosage which had 8 hours on the timer. Second half which you will get about 2 weeks after if they see you are doing ok they will up the dose rate and lowered the my time in the chair to about 4 hours. Best thing I can suggest is pack yourself something to do, snacks and drinks.
Hello @starlocket10
I’m not on Ocrevus but on monthly Kesimpta, another similar CD20 treatment.
I’ve not experienced any adverse side effects with this one since I started on it, last year.
Possibly made me a little more immunosuppressed but, after years of treatments not just for MS, my lymphocytes (antibodies) have already taken quite a battering for a while now.
Kesimpta has greatly eased my constant back pain, which is a huge positive.
Good luck and all the best,
JP
Hi
Im going to get my 5th ocrevus infusion next month, you will be monitored during the infusion and im usually ok during the infusion. My latest mri showed everything was stable so its doing its job.
It wipes me out for a couple of days afterwards so probably best to take time to rest.
Yeah have felt that normally take a week off after to get my energy back. Forgot to mention that cheers for doing so.
iIt really is overwhelming, firstly the diagnosis then trying to get your head round all the potential treatments and potential risks.
i have been on Ocrevus for 4 yrs now after ‘dabbling’ hahafor 8 yr in Rebiff, Copaxone, Tysabri and Gilenya and numerous steroid courses for active RRMS
Ocrevus stopped any further lesions on my brain with very limited side effects.
Think if it’s appropriate for you, then take the leap of faith, I’m so glad i did…
good luck
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