@friendly_james 

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friendly_james

Before treatment meeting. Ocervus. What should I be asking?

Diagnosed in March, I chose Ocervus for Relapsing Remitting MS. I'm equally desparate and scared for treatment to start, the hospital will not give me a date for treatment to start, so that is top of the list. Any tips on what else I should ask about, I hear I need to be my own advocate with the medical profession but lack confidence or knowledge of what the heck I should be finding out about or standing firm on!
@Boulevard_Soul

Morning @friendly_james, That's good that Ocrevus was available to you, I know earlier in the pandemic it wasn't being offered in the UK due to it being an immunosuppressant, but by all accounts it's a great drug. I'm on Tysabri but am considering changing to Ocrevus as it's lower risk. I suppose the main things you'd want to know about are: How the infusions are given (i.e. how often, for how long etc.), what are the potential risks/side effects of the drug and how effective is it. Totally understandable that you feel you lack confidence and knowledge, it's a very overwhelming and complex thing to wrap your head around, especially as you were only diagnosed in April! In my experience it doesn't hurt to do a bit of research before the appointment, so that you're familiar with the basics of the drug you're opting for, but in theory your consultant should help you understand the rest. You're not a neurologist (I assume? Apologies if you are!) so you can't be expected to do a deep dive into all the research/statistics and be an expert; that's what the doctors are there to help with! Best of luck ( :

@NorasMom

The actual treatment is very simple. You'll start with 2 infusions a couple weeks apart and then get additional ones every 6 months. Hopefully, the nurse will explain what she's doing every step of the way. Over here, I was led to a small private room with a comfortable medical exam chair. They put a needle into your arm and start you off with (I believe) steroids and antihistamines to counteract side effects of the Ocrevus. When the Ocrevus starts, you may feel a burning in your arm, but it goes away soon. Then you just sit and wait for up to 4 hours. You'll want to take drinks, maybe some food, and a book or electronic device. I actually fell asleep during mine. Prior to starting the infusion, they should explain to you that some people develop hives, a rash over arms or face, a sore throat, or difficulty breathing. If any of those things happen, and they come on very quickly!, notify the nurse immediately. She'll pause the infusion and give you drugs to counteract your issues. They'll go away as fast as they came, and you'll continue the infusion. After it's all over, they'll keep you around for a bit just to make sure that you're really okay. Some people find themselves completely hyped up for 12-24 hours after the infusion, but others go straight to bed. I don't recommend driving yourself home. It was actually one of the simplest medical procedures I've ever had and not at all worth all the fear I'd worked up beforehand.

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