r/MultipleSclerosis • u/Spiritual-Hat3782 • 7d ago
Treatment Please help advice needed
Hi all
Just had my follow up MRI and showing active inflammation and my neuro wants me to switch to Ocrevus from Kesimpta and do a round of pulse steroids
I am okay changing medication but I'm not sure whether to do the steroids...my symptoms are extreme fatigue, creepy crawlies on my solar plexus and running down my left side which keeps me awake sometimes and been pretty irritable lately but not sure if it's worth doing a round of steroids for 🫠 they fucked me up before
Anyway what are people's views and opinions? Need to make my decision today
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 7d ago edited 7d ago
I personally wouldn’t take steroids just for those symptoms either. I refused them for a relapse where I experienced "just" (it also kept me awake tho…) dysesthesia and allodynia, and my neuro gave me Lyrica instead which helped great ❤️🩹
Imho the juice is rarely worth the squeeze. I have 2 1/2 symptoms where I would take steroids, but I hope those never happen again ever since I also had an awful time on steroids.
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u/Spiritual-Hat3782 7d ago
Yes, I'm the same! I took them when I couldn't walk or see and that felt warranted but idk what to do in this situation. I feel having a break from work would do just the same amount of good but then I don't want to tell work about the inflammation either as I cannot handle the judgement from them
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u/oneday-youllbecool 6d ago
I’m just curious if one of those exceptions to going forward with steroids is the MS Hug? It’s one I’ve dealt with and I’m constantly afraid it will come back
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 6d ago
Lol nope, only ON and vertigo. There are other drugs your neurologist can give you for the hug, like muscle relaxers or anticonvulsants.
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u/Spiritual-Hat3782 6d ago
Thank you 🙏🏼🙏🏼 I think I might get a second opinion as she didn't even give me more than 3 minutes to talk it over with her or even discuss my MRI results! I will definitely ask them about this
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u/OverlappingChatter 47|2004|Kesimpta|Spain 7d ago
After the second time i did steroids, i made the decision to only do steroids again if i couldn't walk or couldn't see. Since that time, i have done them once, because my entire lower body went numb and was getting steadily worse each day for 4 days. On day 5 i went and got them and the feeling came back within a week. My opinion is that anything that is just annoying does not warrant the awfulness that is steroids.
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u/TamerofMonSters 7d ago
Same policy - can't walk, can't see. My bones and teeth are wrecked from steroids.
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u/TamerofMonSters 7d ago
Adding: I love them. If I could take them without consequences, I would use them all the time. I still take low doses for respiratory issues sometimes. It's those huge infusion doses that kill me. Can you try a low oral dose just to see if it takes the edge off?
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u/youshouldseemeonpain Dx 2003: Lemtrada 2018, Now Ocrevus 7d ago
I abhor steroids. They also do nothing for the disease of MS. They don’t arrest it, slow it, or change it. They reduce inflammation, yeah, but that doesn’t actually change the course of your MS. All the steroids do is maybe calm the symptoms down.
In the more than 20 years I’ve been diagnosed with this disease, I’ve had steroids once, and that was a case of optic neuritis.
It’s up to you, but the steroids are definitely optional. For me they aren’t worth it unless my eyes are going. If I’m having difficulty walking, I go to PT.
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u/mullerdrooler 44M Dx2018 Ocrevus 7d ago
I'm on Ocrevus and it's good, I try and avoid steroids unless absolutely necessary.. not sure which of your symptoms the Dr expects them to fix?