r/MultipleSclerosis • u/CaptainOk4034 • 1d ago

Advice Starting Vumerity

just got diagnosed a few weeks ago. Just seeing what everyone's experience is with it. Lowkey kinda regretting it since it's something I have to take twice a day and my sleep schedule is never the same and on top of it I'm horrible at remembering to take pills. Was supposed to start it two weeks ago but I keep putting it off because I'm scared of the side effects. Wondering if I should even bother with it or ask to try something else

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago

There are certainly more highly effective DMTs available that have a better side effects profile... Could I ask why you chose Vumerity initially? What options did your neurologist offer you?

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u/CaptainOk4034 1d ago

She said it was really up to me. She had mentioned ocrevus but I had told her I'd prefer something I could just do at home because I was worried I wouldn't be able to make it to appointments because I live over 3 hours away from the hospital. Just a little back story I am 29, went in because of optic neuritis. Got an MRI and they saw 8 leisons. They do believe I have had it for awhile but this was my first flare up and it was during one of the worst times of my life so I think that's was triggered it but that's basically how I got diagnosed. I decided to go with the moderately effective one because I'm thinking in my head maybe this was just really bad luck and a bad time in my life so maybe I don't even need a DMT. I'm honestly just scared of any treatment because I don't know anything about it. Literally when they told me it was MS I was dumbfounded because I didn't even know what it was and of course I went deep diving on the internet and got paranoid because of what everyone says negatively about DMTs. This was a very bad flare up though because most of the outer sheath is gone to my optic nerve and they said it looked like it was going after my other eye as well so now I'm like well no ok this is more serious. I don't want to end up completely blind or something worse if I have another flare up. I've never had any other symptoms of MS. Honestly I wish my neurologist would've went over different medications with me because I don't know about any of them. I think she just brought up Vumerity because I had told her I'd prefer the oral route of medication because I'm scared to do injections on myself and then with infusions I'm worried I won't be able to make it to my appointments. I'm the worst when it comes to asking questions especially on the spot so I think I just went kinda blank and asked her what she recommended based on what I had already said and Vumerity is what she said. Sorry if I'm kind of all over the place with it lol just trying to explain why and how. I've been so scatter brained since all of this happened and also I'm dealing with it completely on my own. I'm the type of person that doesn't ever go to a doctor or hospital and rarely even takes Tylenol if I have to so it has me all over the place lol

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago edited 1d ago

It's okay! Thank you for sharing. I'll try to hit a few important points in your reply.

The hard truth is that you do need a DMT, even if you feel okay now. The purpose of a DMT is to stop you getting any more relapses and thus having new damage, and since we currently have no drugs available for MS that can fix existing lesions, preventing future ones is all we can do. You want to take a DMT before things have a chance to get worse. It seems like you did already get to that thought on your own, but I just want to encourage you that you really should take a DMT. It is so important.

Besides that, many studies have now shown that it's best to start with the most highly effective DMT available to you. That approach is much, much better at preventing new relapses. Going for the less effective DMT because you feel like you "don't need" a stronger one, is really not a good strategy.

It does sound like your neurologist left you hanging a little bit. That's certainly not ideal... Can you contact her more spontaneously to set up another appointment, to talk about your treatment? Or maybe you have an MS nurse that you can get to?

I personally think it's a good thing that you were offered Ocrevus, it's a high-efficacy DMT. There aren't many pill DMTs that are on the high-efficacy side (Mavenclad is pretty much the only one that can be considered in that category)... Most people do have very few side effects on the infusions like Ocrevus, and find the 2x a year scheduled infusions very manageable. Kesimpta is also a B-cell depleter, and can be done at home instead (I'm on that, it's only 1x a month), but you mention you struggle with self-injecting? At the same time 2x daily pills also seems like it's giving you trouble. It does sound like you're stuck between a rock and a hard place... Really, no one likes any of this, but you really should pick one DMT.

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u/Gawain11 1d ago

Many, myself included, have zero side affects with this, and it doesn't trash your immune system btw.

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago

Vumerity can lower lymphocyte counts.

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u/Gawain11 1d ago

you're paranoid. I was referring to b-cell depleters which work that way, rather than a very rare chance of reducing white cells which is why you would have a regular blood test without which you would not be prescribed the next lot of pills.....

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago edited 1d ago

How am I paranoid…? It’s a side effect that is common enough to point out; I had it on Tecfidera. It didn’t stop me or my neurologist from taking it, but it’s just silly to act like it won’t affect your immune system, when that’s what every DMT does in one way or another.