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@Lisa_Mills 

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Lisa_Mills

Experiences of Ocrevus

Before I start, I want to say, I know it's early days... I was diagnosed in Aug 2019 with RRMS after 18months with a CIS diagnosis. My initial scan showed lesions but they couldn't tell how old or if active. 6 months later a second scan was stable. 6 months later my third scan showed new lesions which meant I got the diagnosis and a week later I started Ocrevus. Right now I am lucky in that I have very few symptoms, asides from pins and needles. However, between my second and third scan I had periods of what I can only describe as vertigo. I have now linked them to the development of the new lesions that were evident on the subsequent scan. As I say I started Ocrevus in early September last year. I had two half doses and am due my next full does on Feb 20th with my yearly scan due in June. However, since Christmas I have been experiencing vertigo again so I fear the worst - new lesions. My questions are: 1. Does this mean Ocrevus isn't working or is it too soon to know? 2. How do you know it's not working - do they look for specific evidence? 3. How quickly should you expect to see improvements 4? What next? I have sent this questions to my neurologist this morning but thought I'd ask here in case anyone has any insight. Thanks Lisa
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@ItsMewithMS
@ItsMewithMS
 

I suspect they will say it is too soon to "know if Ocrevus is working" but they should do a thorough compare of your previous MRI to a new one looking to see if an old lesion is expressing itself or if there is a new one. The fact is that they can't see everything in an MRI but it is the best we have right now. If there is activity, especially if it is affecting your gait, vertigo or your vision, the typical course is to shut down the inflammation quickly using a massive dose of steroids. I understand you can take them orally but I have always had a 3 or 5 day infusion like this https://infuserveamerica.com/104/elastomeric-pumps/ What will an MRI tell them/you? they look for many things. They look for activity which will be represented by white spots if they do MRIs with and without contrast. If you have an MRI in newer 3T machine they may be able to not do a second round with contrast so it is worth knowing what model MRI is being used. You should also discuss black holes and overall brain volume loss. More on MRIs can be found here https://www.youtube.com/watch?v=w02_oCm5G0I Dr Boster Progression/Leaky Pool Model Good video to watch to better understand the difference between Progression and "leaky pool" model of neurological reserve https://www.youtube.com/watch?v=fZPQ48N-nIs Ask if they use the Neuro Quant tool to analyze your MRI and measure brain volume loss. There is a lot to learn from your MRI for all that time sitting in that damn tube listening to all the knocks and bangs. It had better be worth it! Learn all you can and ask all you can. You have a good list started- I'm sure this group will give you more ;-) As you know that is how you can get the best care- Good Luck!

@Stumbler
@Stumbler
 

@lisa_mills , don't overthink the vertigo reappearing. This seems to be an old symptom resurfacing. These can flare up when there's something going on in our life or body. Being over-tired or stressed can cause symptoms to flare, as can infections, e.g. UTIs. So, "listen to your body" and see if you can respond favorably. Good luck with the next MRI.