Last reply 1 month ago

I need some direction on what to do. I’m suppose to start Ocrevus soon, however, I have been putting it off because of the COVID. The only thing is.. my feet keep going numb A new symptom I have been experiencing. The last time this happened the numbness traveled up my legs and I wasn’t able to walk (first attack). I’m so afraid of that happening again. I’m conflicted…

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1 month ago

Hi @kelly-hornick. Well, there is a chance they will cancel your first infusion, which is what they did with all Ocrevus a few weeks ago. However, since then, they have been re-assessing the risk level and it’s not as high as thought. Your hospital will be the decision makers based n the right evidence. But, there are lots of Ocrevus folks on here. Have you checked out all the recent activity on here regarding Ocrevus? Lots of specialist input on here with really important links. Lots of support on here for you

1 month ago

@kelly-hornick Hi. The advice is that Ocrelizumab can and will be used where, in the opinion of the neurologist, the risk of delaying initiation outweighs any potential harm.

The benefits are well known and thoroughly researched. The harms are theoretical and seeming less likely than first hypothesised. (I am on ocrelizumab so follow this closely).

In several of the videos I have recently made for it has been asserted by different clinicians that really, most MS meds at the potentially riskier end of things, the use of a medicine is all about individual patient circumstances with the aggression and speed of progression of the individuals’ MS, the risks of future and irreversible harm to brain, spine etc all weighed up.

With medicine, it is always a risk/benefit analysis. I’d quiz my medic most intently but providing they gave me cogent well-reasoned answers then I’d follow their advice. They have your interests at heart.

1 month ago

The decision may also depend on your region and the risk factors locally. I don’t know how things are up in Windsor Canada but I’m in the US in western Wi going for an Ocrevus infusion next Thurs (16th) and it is still on. It is my first full dose (initially you have two half doses spaced an interval apart). Prior to starting I had some paperwork and labs/bloodwork so that all takes some time…hopefully you have that started or there is a natural delay in the process…on top of the possible delays due to the current Covid-19 impacts.

Hopefully you have kept up on all the updates that Dominics has posted to Shift MS to keep us up to speed on the specific impacts of the virus on MS patients. There is also a complete playlist that Dr Boster has put together on his channel

In summary there was initial concern about the MS DMTs and the virus. They each have to be looked at independently as far as how they work and how the individual patients are doing. While initially being on Ocrevus was thought to be bad due to the impact on immunity it impact is on our B-cells and our T-cells remain intact. It is the T-cells we need to fight the virus and provide some immunity. So we are good. The DMT also reduces an over-active immune response which is a big concern with this virus so that is also good. So – I’m glad that my treatment plan is still going forward. My neuro said I could wait a month if I choose but I think by that time that the virus will actually be worse in my region so want to get in front of it-

Check out the playlist of Dr Boster’s and the posts that Dominics has been putting to the group and of course your own Neuro and/or nurse for what is best for you. For my situation (already had my first half-doses, slow MS progression in SPMS and in otherwise good health, in a relatively low virus risk area and able to self-isolate before and after the infusion) I am good to go forward with another infusion…but you can see a lot weighs into that decision 😉

1 month ago

@kelly_hornick , going back to your original concern, the worry/stress that this situation is causing you may well be the reason why these old symptoms have re-surfaced.

Hopefully, the technical answers above may have allayed your fears and concerns. So, hopefully, you worries and concerns will have subsided somewhat.

1 month ago

Thank you everyone for the feedback. I will look at the resources you have provided.

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