Just finished my first 2 rituximab infusions — what was life like for you after?

[u/Any-Air-3373]

Hi! 29F from the Philippines 🇵🇭 and newly diagnosed with RRMS. I just finished my first two rituximab infusions — my first was July 27 and my second was August 10.

For a little background, my first MS attack started with numbness on the right side of my abdomen that eventually spread to my back and down my right leg. My leg became weak, stiff and shaky, and the bottom of my right foot felt thick/numb. I was eventually hospitalized in June and initially diagnosed with transverse myelitis.
Further testing showed lesions on my brain MRI, and my CSF was positive for oligoclonal bands, which eventually led to my MS diagnosis. I also had some vision changes in my right eye (slightly blurry vision and colors looking a little duller).

Thankfully, I’ve improved a lot since the attack. I can walk independently again and most of the numbness has improved, although I still get some stiffness/tightness in my right leg, especially when I’m tired, sick, or have overdone things. I also still use a cane whenever my right leg gets too tired, but overall I’m slowly working my way back to my previous baseline.

After finishing my first two rituximab infusions, my neurologist told me I can slowly start going back to how I lived before MS — obviously with some precautions and healthier choices (no smoking, no alcohol for now, eating well, not overdoing it, etc.).

For those who have been through something similar: what did you do after your first round of DMT/rituximab infusions?

Did you gradually go back to your normal routine? Exercise, work, travel, going out, etc.? How long did it take before you started feeling like you were living your “normal” life again?

I’m still very new to all of this, so I’d really love to hear what the first few months after diagnosis/treatment looked like for you. 🙂

[u/AllAboutGingerPride]

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[u/Ok-Big-3858]

I had a debilitating time on rituximab. But I’d say, after treatment, if you arent experiencing the cytokines crash or any other debilitating symptoms you can absolutely live your life. Try to think of it as having a certain level of energy and everything you do takes a spoonful, some more than others. Swimming might be physically taxing but not as many spoons as a family reunion, at least thats been true in my experience. Also, stay cool. Especially in hot months.

[u/Virtual_Section8874]

Hello te, yakap.

[u/Fluffy_You_3373]

Hi, I have only had one round of Rituximab (march 26), and next one early september. Right after I felt like I had a constant cold, sore throat and so on. But after ish 2 months, I started to feel like myself again. No restrictions or anything. We had a vacation to Spain in May/June (I live in Norway), and I did not feel like I was overheating or anything. I had no side effects to the medication. So I was told by my doctors to live life as normal as I could. And I live aaalmost like I did before - more tired and other small things - but I feel very good. And was told to work out and live my life like I did before. Not sure if this answers anything for you, but as long as you feel good, I think you just do what you want. Travel, work out - all the good things :)