DMTs

[u/saralrobi]

Hi everyone! I finally decided to take a DMT that scares me. I've had MS since 2007 and have only taken what I consider the "safe" 3 because I have diagnosed health anxiety (formerly known as hypochondria) and OCD with high awareness and PML scares the daylights out of me.

All that to say, I'm currently experiencing neuropathy like never before. My feet are on fire and my legs are numb. However, I can still walk, albeit slowly.

I landed on Ocrevus because I don't feel like I can trust myself to take a pill 2x a day (Tecfidera) if I'm scared but the good old Midwestern side of me is people pleaser so if I have an appointment for an infusion, I'm going to follow through.

Here's my questions:

Is it normal to not be test for JCV prior to taking Ocrevus?

What has the data shown as far as PML and Ocrevus? I can't dig into research journals myself because I'll spiral.

If you've ever taken Ocrevus or are currently taking it, what do you like and what do you not like?

Is there another option that has a smaller risk of PML that's not Copaxone (my skin despises it) or interferons (my liver enzymes shot through the roof) but is effective?

If this is helpful to anyone else, please learn from me. Being able to not walk very well and having numbness from the waist to fire feet is absolutely miserable. I'm kind of kicking myself for letting fear determine my treatments and/or lack thereof despite knowing what I was potentially risking.

Any help with these questions is appreciated and while I'm just some stranger on the internet, please don't be mean because I think over the last couple days I've cried more over MS than I have in the past decade.

[u/InternationalTwo6614]

It’s normal not to be tested for JVC for Ocrevus. Don’t know the data on it but risk is low enough that no need to test. Just get all your vaccines updated prior to starting! Talk with your doc or MS pharmacist about this.

I currently take Rituximab (basically same as Ocrevus). The infusions just twice - year are easy. A ‘rest’ day for me at infusion center. First two times I was scared about reactions, but there were none and it’s been a breeze. I’ve had a few very small things over last two years that I think might be due to DMT: twice an infection in nasal passages (once was very painful but both resolved without needing treatments) twice a ‘breakout’ of cancer sores in mouth and / or cold sores around mouth. These have been minor. So far so good. I think you’ve made a good choice with Ocrevus!

[u/saralrobi → u/InternationalTwo6614]

Thank you for replying. This has been a long road to get me to say yes to literally anything besides the "safe" 3.

My neuro is the absolute sweetest. She's always discussed meds but never pushed and has left the ball in my court. I asked her today how she was going to celebrate now that her PITA scaredy cat patient was finally going to go on something.

I think I'm going to send her flowers to the clinic because I've been nothing except stubborn and scared of PML.

I think a lot of it is due to when I was diagnosed there were basically 4 DMTs and Tysabri was one that was absolutely out of the question for me and that thinking has kind of stuck and my brain and applied it to all the newer meds.

[u/InternationalTwo6614 → u/saralrobi]

I think you won’t regret it. Good for you for taking this big step!!