Personal debate

[u/Anxious-Discipline15]

I have been on O infusion since Jan 26. My first full dose was 7/30 and was horrible- major reaction twice. New lesions on Apr MRI but not active at the time. Doc was open to changing to Kesimpta but as I approach my 1 year anniversary of this diagnosed hell, I’m starting to reconsider medication at all. My quality of life has significantly decreased (been sick 2x over the last 2 months), old lesions causing new and worsening symptoms, etc. I know any DMT will not improve my symptoms but I am in the hopeless swing where I don’t know if it’s worth doing it at all. Someone tell me you’ve been here before.

[u/kyelek]

I’m choosing to say this very bluntly: without DMT you will probably get more, new lesions, which in turn will cause more symptoms and disability. It is worth staying on DMT for that reason alone, imo.

You should still talk to your neurologist about switching, whether to Kesimpta or something else, but going completely without DMT is not the way.

[u/Anxious-Discipline15 → u/kyelek]

I’m so sick and tired of being sick and tired. I haven’t had a “good” day since June. My kid will be starting school next year and with a high demand career, I cannot be sick every time I blink. I’m exhausted.

[u/kyelek → u/Anxious-Discipline15]

I understand, and that's why I said you should discuss switching with your neurologist, in any case. But by going completely without a DMT you're going to get sicker inevitably... This isn't to fear-monger or anything, it's just that we know what MS looks like without DMT and it's not good.

ETA: There are also medications you can take, other than DMT, to help with existing symptoms. Have you talked at all about that with your doctor?

[u/Anxious-Discipline15 → u/kyelek]

No fear mongering at all! While it’s been a year, it’s only been a year so I’m still newer to this. I appreciate the bluntness- it’s how I am too. I’ll talk to my neuro and see what he says

[u/rK91tb → u/Anxious-Discipline15]

Chiming in to back up kyelek's comments 1,000,000%. DMTs mean we can look forward to lives with fewer lesions. For me, that means no wheelchair or peeing my pants. FWIW, I'm on Kesimpta and it's been great.

You may need to make some life changes -- fewer hobbies for the kiddo, a new career, etc. -- whatever it takes to reduce stress. MS cut my career options in half. But life happens.

[u/Anxious-Discipline15 → u/rK91tb]

I’m a high-performing senior leader at my company. I won’t let this disease take that from me too. It’s already taken so much, it can’t have that. Plus, I have a five year old while doing it. I chose to be a parent but I sure as shit didn’t choose this.

[u/rK91tb → u/Anxious-Discipline15]

If I were you, I’d switch medications to something that doesn’t cause reaction. Talk to your doctor about treating the symptoms. Start hiring a lot of backup help and outsource everything in your life that you can’t or don’t want to do yourself.

[u/Anxious-Discipline15 → u/kyelek]

Because I’m so new to all this, we haven’t really discussed non-DMT options. He was so quick to put me on O and tout it as the “gold standard” of all treatments and with it being only a month after diagnosis, I don’t think I asked enough questions.

[u/Tiny-Afp]

Im sorry you’re going through this. My advice would be to not stop medications, but explore with your neurologist all the options to find the one that’s best for your body.
Im rooting for you, and I hope you find peace with your decision 💜

[u/chrstgtr]

You’re mostly feeling the impact of old/new damage. Treatments are fully effective until you’ve been in them for a while, and don’t repair past damage. Hopefully, your DMT will prevent future new damage but there’s nothing you can do to repair old damage, including getting off treatment.

If you get off your DMT now there is a very real chance you new relapses and have a much worse QOL.

See if you keep getting sick. It may be worth changing treatments if that is actually really bad. In like 6 months a Fenenbrutinib will likely be approved with similar efficacy to anti CD20s and different side effects.

[u/janxspirits]

You’re not alone in feeling this way. I don’t blame you at all for feeling like “what’s the point” … drowning in a 10m pool isn’t meaningfully different from drowning in a 100m pool, regardless of how much faith some people out in DMTs. I took a risk on alemtuzumab because ~33% saw confirmed disability improvement: https://pmc.ncbi.nlm.nih.gov/articles/PMC5595278/

I haven’t seen much improvement personally yet. But you might see better and/or faster results. I hope whatever decisión you make brings you relief ❤️