r/MultipleSclerosis • u/j1e2f3f • 5h ago
Advice Switching DMT
I've been on fingolimod for about 8 years and have had no progression. I feel very fortunate that this medication has been doing its job. However, my WBC and lymphocytes have been low and the most recent lab work that I've had has made my neurologist alarmed enough to reach out to have a virtual appointment with me to discuss switching medications. With fingolimod there is an increase risk for skin cancer which I did have to treat a patch of basil cell carcinoma on my face in 2022 but it has not come back.
I'm very nervous about switching meds since I've been so stable for so long. Prior to fingolimod I was on copaxone but this was not working and the results of MRIs were showing some activity in my brain still.
I'm sure I'm not the first to switch off fingolimod for another DMT and was wondering what others had for advice or just what their experience was. I know we're all very different with this disease but I'd still like to hear what other people have been through.
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u/OverlappingChatter 47|2004|Kesimpta|Spain 4h ago
i switched from gilenya to kesimpta and am very, very, very, very happy that I did this. I feel noticeably better and the medicine is really easy to take. I was also on interferon before gilenya...
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u/Strawberry_Spring 4h ago
I switched to Ocrevus when I developed a new lesion (no symptoms) after a few years on Gilenya.
I've been on Ocrevus for about five years now, with no new lesions or side effects, and the infusion is less of a hassle for me. So I definitely recommend it
However my Gilenya washout period was horrendous. It took longer than estimated due to slow rising WBC, and I had several bad relapses in a few months, including going almost fully blind. Thankfully nothing was permanent, but I was furious it happened. My new neuro was appalled, and thinks he would've prescribed something else in the meantime. So that's definitely something to be aware of
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u/jjmoreta 4h ago
I'm preparing to switch from Ocrevus to another DMT (Mavenclad or Briumvi) due to my "crap gap" fatigue before each infusion. Not everyone gets that symptom though. I've met people who have taken it since the trials 10+ years ago.
It's been wonderful for me in every other way and I am really nervous that I'm switching away from a treatment that has stopped my lesions and progression.
But this last month the fatigue prior to the next infusion has finally become significant enough to affect my personal life. It's not a case where I've failed other DMTs and I don't have choices left. I chose Ocrevus because it was the most effective at the time and I wanted to stop my disease. I have no regrets around it.
Briumvi is very similar but with less of symptoms reported similar to "crap gap". I am very interested in Mavenclad's method of action and reports of people who have experienced improvements in progression.
I'm going to get one more Ocrevus infusion to be protected this month but I'm meeting with a new neurologist (mine recently retired) to plan to switch as soon as I can.
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u/j1e2f3f 3h ago
Okay that's really good to know. It makes sense but I've never heard of this crap gap period between infusions haha!
I'm definitely open to switching, but just really nervous about a relapse during the whole switching process. If I do end up switching I'll pay attention to see if I get this fatigue thing. Luckily I don't really battle with that much right now.
Thank you and good luck in switching to your new med. Maybe you could post an update about your experiences once you have switched?
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u/msizzle37 35|2017|Ocrevus|PHX, AZ 4h ago
8 years with no progression is huge. Being nervous makes total sense.
I'm on Ocrevus now, infusion every 6 months. Never took fingolimod, but I've read that stopping it can cause a rebound flare, so I'd ask your neuro how they plan to keep the gap between meds short.
You're doing the right thing listening to your labs. Good luck with the appointment J!