Last reply 1 month ago
moving to Ocerevus – SCARED

Hi all,
I am supposed to be moving to Ocrevus soon.
I have 1.44 JSV antibodies and the docs here are scared that I will get PML.
My 2 years on Natalizumab (Tysabri) is up on 2 Oct 2020 and they want me off Natalizumab really soon.
My problem is that I am allergic to many medicines and had 5 weeks of incredibly intense nausea upon starting the Natalizumab. This is resulting in me being scared to change medicines despite the supposed 1 in 500 chance of me getting PML.
I also have another major medical issue – Ehlers-Danlos Syndrome (Classical) which is a connective tissue disorder which means I dislocate joints and am prone to allergies (among other things).
I would appreciate any advice regarding thoughts on what you would do if you were me, and also stories on how things were for you when you changed.
Thanks in advance.
Pixie

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stumbler
1 month ago

@pixiefield , I’m sure you’ll get some responses soon.

In the meantime, select the “Ocrevus” Tag, that has been automatically added to the foot of your post above. This will locate previous discussions on this treatment. 😉


itsmewithms
1 month ago

I’m not a particularly sensitive flower so may not be the best person to ask but I have had no real negative reaction to Ocrevus. That said I haven’t really had any big improvement but the main purpose is for it to prevent future lesions so it is what I was hoping for.

The only allergy I have is to penicillin and no other real health issues other than having a hip replacement a few years ago likely due to the impact of my MS gait/foot drop.

When you receive your infusion you will also receive a benedryl IV and Sol Medrol to control any reactions. You are closely monitored during the infusion and it is halted if there are any reactions. This happened in my first 1/2 dose when I developed a slight rash on my cheek. It was quickly resolved and the infusion resumed. I guess that is pretty typical and I had no reactions in the second half dose (also normal) and again no reaction to the first full dose. That is where I am now.

So 8 months into switching to Ocrevus and will be going into my first MRI since the switch soon. That will be the true test, I suppose, but mobility and cognitive impact has been stable which is really a win 😉

Just make sure they are fully aware of your history and concerns. I also had some over the counter Benedryl on hand and took it for a couple of days after the infusion. I did have some trouble sleeping and felt kind of “bouncy” after the infusion for a few days. My neuro felt this was likely due to the Sol Medrol which he will reduce a bit in my future infusions.

Good luck! If you click the Ocrevus tag at the bottom of your post you will see a lot of discussion on this DMT, it it is very effective and thus popular right now.

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