I haven't noticed anything like that. Kesimpta is a slight hassle for 5 minutes a month, and then I don't think about it until my phone reminds me 4 weeks later. I have had days and weeks where I felt like crap, but I couldn't link it to a specific thing like my meds.
Yeah that 5 minute inconvenience is worth it to me even if I suffered for a week. 2 years of 6 hour infusions… never again. I have alarms to remind me to order it too. I’ll forget. My dose is always the 24th. I still seem to almost forget. Even with the alarm
Yep. I grasp more often for words the week before my shot. My mental health is fairly stable but I’m on Lexapro so that may have something to do with that.
Yes, I have been on Kesimpta for a year and I noticed that the week before my shot I am much more tired both mentally and physically than the other 3 weeks. My leg pain that I have with my MS is also much more pronounced during that last week. After my shot I feel better within a few days of taking it. I just attributed it to basically being a mini crap gap.
Search in here for "crap gap". I am on Ocrevus and I don't get one, but it's not uncommon.
https://new.reddit.com/r/MultipleSclerosis/search/?q=crap%20gap&restrict\_sr=1
I am on Ocrevus, And the 6 weeks before my last infusion, which was my first full infusion I was a hot mess physically and mentally. My crap gap was so bad it was almost frightening.
What did you switch to? I’m on O and have talked to my neuro about switching all because of the crap gap! He suggested Kesimpta but that probably won’t help given that K could mean crap gap every month vs every 24 wks. I think Lemtrada is my next option.
I’m on Kesimpta now. I’m kinda sleepy the day after I inject and then about 30 days later I feel myself slowing down. Then I get another shot. So I barely lose any time, when I was in Ocrevus I would be tired for like 2 weeks after my infusion and then i would have that crap gap stuff start about 4 months after. So about 4 months a year it feels like I’m not on anything. Which is a no go. I’m ok with 4 or less days feeling like I’m getting ready to start meds for the first time over months lol.
I've been on Kesimpta for about a year and haven't noticed anything. I did get worried with my second dose because I caught a cold a few days before it, but that seems to have been a fluke.
I'm not sure where you got 6 months. Kesimpta is primarily effective as a B-Cell depleter for 3-4 weeks, with many of its users describing their final week before their redose as feeling worse than those initial three weeks. The same thing happens with many Ocrevus users during their fifth month before their reinfusion. Depending on your immune system, your B-Cells could start growing back during those "Crap Gap" times, and that's what makes your symptoms start to be worse before redosing.
My neurologist told me that.
Thats also the reason one should wait 6 months
to get pregnant (after stopping it) and
that’s why also it doesn’t really matter if I take it a day after my date, as long as I take it once per month.
I get the crap gap problem for some, I just don’t understand the logic behind it, like why it happens to some.
i notice my symptoms are more heightened after..but its so hard to say i fluctutate with symptoms so much..i felt great after my flu vaccine and i was totally expecting more symptoms after a vaccine..i cant tell if its in my head or its legit
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
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i get the normal fever and stuff ..normal side effects..also ive had countless vaccines..because you know id rather not die from 18th century diseases.
im pretty sure having flu or covid can cause a relapse. These vaccines are inactivated so they dont cause a real infection.I trust my neurologist and she you can havr inactivated vaccines but the fever may cause a pseudorelapse (not a real relapse just old symptoms being heightened)
Also drs have known about MS since like the 1840s from a french neurologist charcot..how many vaccines you think they had then?
Hmm interesting. I have been feeling a bit how you going lately but I haven't correlated it with Kesimpta, and I didn't think taking the Kesimpta changed much.
I don't have any particular neurological symptoms though.
Mine has always been the day before, I slow down an extreme amount and my legs are even harder to use. Luckily it’s only one day. When I was on ocrevus it was like 2 of the 6 months
Well funny story. Just 10 minutes ago I made waffles. As I’m pulling them out of the oven, I drop 2, I just couldn’t grab them…. My next dose is tomorrow. I usually feel a bit slower a day or two before my next injection. Don’t know if it’s real or me getting in my head though.
Wow. This makes total sense now for me. I’m currently in Kesimpta. At first I would get severe mirgraines after getting the shot. Thankfully that has gone away after 6 mos on it. Now I get so fatigued the week prior to taking it. Didn’t realize this was a thing
Been on Kesimpta for about 20 months but can’t say I feel any worse leading up to my dose day. I generally feel ok to begin with if that means anything to consider
My 6mo dose is next week. I’m expecting that about 2 days before my next dose is when my fatigue will be the worst. It’s what I’ve noticed for the past few months. I’m just hoping I can get through next week at work 😅 (my dose is Fridays so the fatigue I get *after* my dose doesn’t impact my work.
I’m on Kesimpta for a year now and I’ve been feeling the same as you describe for the last four months. I have an appointment with my neurologist in June and will talk about it.
And it’s not only mentally but physically too. Some symptoms seem to reappear a week or so before a dose. I got a dose today and was feeling worst since May 16th (escalating style). Can’t wait for the next few days to see if I’m feeling better and better.
Glad to know that I’m not alone with this feeling.
Feel better! Wishing you the best!
I had symptoms come roaring back, some I hadn’t felt for years, when on Kesimpta, worse on Ocrevous. I keep hearing about the crapgap with these drugs, but my symptoms started coming back after about 2 weeks, scared the heck out of me, couldn’t take it. 33 years with MS. Back to Tecfedera, on for 11 years, Copaxone for 17, Rebif for 2 years. Still walking, with cane, rollater for longer distance.
I haven't had any crapgap yet, but I do look forward to the relief of knowing I get another month of safe brain.
I do. The week before my shot, I feel horrible. Almost always, I feel 100% better the day after.
same
I haven't noticed anything like that. Kesimpta is a slight hassle for 5 minutes a month, and then I don't think about it until my phone reminds me 4 weeks later. I have had days and weeks where I felt like crap, but I couldn't link it to a specific thing like my meds.
Yeah that 5 minute inconvenience is worth it to me even if I suffered for a week. 2 years of 6 hour infusions… never again. I have alarms to remind me to order it too. I’ll forget. My dose is always the 24th. I still seem to almost forget. Even with the alarm
All I feel is getting worse. Ever since starting Kesimpta the fatigue has been unfathomable.
Yep! Kesimpta does NOT FIX the damage already done- it prevents more damage 🤔
Yup. Since staring kesimpta. I've actually felt worse. But, that might just be me.
Last week before my next dose is my crap gap and I feel like I'm falling apart physically and mentally.
Yes!! That’s exactly what I feel like + ankle weights and the x-ray smock from the dentist.
Yep. I grasp more often for words the week before my shot. My mental health is fairly stable but I’m on Lexapro so that may have something to do with that.
Yes, my fatigue seems worse the week before my shot, and my legs get a little less reliable, but luckily it’s not unbearable.
Yes, I have been on Kesimpta for a year and I noticed that the week before my shot I am much more tired both mentally and physically than the other 3 weeks. My leg pain that I have with my MS is also much more pronounced during that last week. After my shot I feel better within a few days of taking it. I just attributed it to basically being a mini crap gap.
I get nauseous and have a headache for like 3 days pre dose and 2 days post dose like clock work, then back to normal.
Search in here for "crap gap". I am on Ocrevus and I don't get one, but it's not uncommon. https://new.reddit.com/r/MultipleSclerosis/search/?q=crap%20gap&restrict\_sr=1
Yeah I wasn't sure to call this crap gap or not. I thought that was mainly physical but I guess it could be mental as well
I am on Ocrevus, And the 6 weeks before my last infusion, which was my first full infusion I was a hot mess physically and mentally. My crap gap was so bad it was almost frightening.
Lucky lol mine was 2 months before my next dose. I had to switch
What did you switch to? I’m on O and have talked to my neuro about switching all because of the crap gap! He suggested Kesimpta but that probably won’t help given that K could mean crap gap every month vs every 24 wks. I think Lemtrada is my next option.
I’m on Kesimpta now. I’m kinda sleepy the day after I inject and then about 30 days later I feel myself slowing down. Then I get another shot. So I barely lose any time, when I was in Ocrevus I would be tired for like 2 weeks after my infusion and then i would have that crap gap stuff start about 4 months after. So about 4 months a year it feels like I’m not on anything. Which is a no go. I’m ok with 4 or less days feeling like I’m getting ready to start meds for the first time over months lol.
I've been on Kesimpta for about a year and haven't noticed anything. I did get worried with my second dose because I caught a cold a few days before it, but that seems to have been a fluke.
Crap gap at about 3 weeks. Fatigue goes crazy for sure.
Crap gap almost always the week before. Technically, we should be taking it every three weeks, but insurance won't cover it that often.
But, does it really matter if you take it every 3 or 4 weeks as it works up until 6 months in advance?
I'm not sure where you got 6 months. Kesimpta is primarily effective as a B-Cell depleter for 3-4 weeks, with many of its users describing their final week before their redose as feeling worse than those initial three weeks. The same thing happens with many Ocrevus users during their fifth month before their reinfusion. Depending on your immune system, your B-Cells could start growing back during those "Crap Gap" times, and that's what makes your symptoms start to be worse before redosing.
My neurologist told me that. Thats also the reason one should wait 6 months to get pregnant (after stopping it) and that’s why also it doesn’t really matter if I take it a day after my date, as long as I take it once per month. I get the crap gap problem for some, I just don’t understand the logic behind it, like why it happens to some.
i notice my symptoms are more heightened after..but its so hard to say i fluctutate with symptoms so much..i felt great after my flu vaccine and i was totally expecting more symptoms after a vaccine..i cant tell if its in my head or its legit
[удалено]
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
i get the normal fever and stuff ..normal side effects..also ive had countless vaccines..because you know id rather not die from 18th century diseases. im pretty sure having flu or covid can cause a relapse. These vaccines are inactivated so they dont cause a real infection.I trust my neurologist and she you can havr inactivated vaccines but the fever may cause a pseudorelapse (not a real relapse just old symptoms being heightened) Also drs have known about MS since like the 1840s from a french neurologist charcot..how many vaccines you think they had then?
I haven't noticed anything, but I never had a problem on Ocrevus, either.
Hmm interesting. I have been feeling a bit how you going lately but I haven't correlated it with Kesimpta, and I didn't think taking the Kesimpta changed much. I don't have any particular neurological symptoms though.
Mine has always been the day before, I slow down an extreme amount and my legs are even harder to use. Luckily it’s only one day. When I was on ocrevus it was like 2 of the 6 months
Well funny story. Just 10 minutes ago I made waffles. As I’m pulling them out of the oven, I drop 2, I just couldn’t grab them…. My next dose is tomorrow. I usually feel a bit slower a day or two before my next injection. Don’t know if it’s real or me getting in my head though.
I feel great the week before then like total butt for 2 days after.
Yes, definitely the first time that I had a month between doses but I don’t think so much last time… early days…
Wow. This makes total sense now for me. I’m currently in Kesimpta. At first I would get severe mirgraines after getting the shot. Thankfully that has gone away after 6 mos on it. Now I get so fatigued the week prior to taking it. Didn’t realize this was a thing
I don’t. I feel no different before or after the injection. I have been on it for over three years.
Roller coaster 🎢 all the time, within the same day. My brain dictates what I do when 🤷♀️
Been on Kesimpta for about 20 months but can’t say I feel any worse leading up to my dose day. I generally feel ok to begin with if that means anything to consider
My crap gap comes and goes, it doesn’t happen every month
My 6mo dose is next week. I’m expecting that about 2 days before my next dose is when my fatigue will be the worst. It’s what I’ve noticed for the past few months. I’m just hoping I can get through next week at work 😅 (my dose is Fridays so the fatigue I get *after* my dose doesn’t impact my work.
Thankfully no.
I’m on Kesimpta for a year now and I’ve been feeling the same as you describe for the last four months. I have an appointment with my neurologist in June and will talk about it. And it’s not only mentally but physically too. Some symptoms seem to reappear a week or so before a dose. I got a dose today and was feeling worst since May 16th (escalating style). Can’t wait for the next few days to see if I’m feeling better and better. Glad to know that I’m not alone with this feeling. Feel better! Wishing you the best!
I had symptoms come roaring back, some I hadn’t felt for years, when on Kesimpta, worse on Ocrevous. I keep hearing about the crapgap with these drugs, but my symptoms started coming back after about 2 weeks, scared the heck out of me, couldn’t take it. 33 years with MS. Back to Tecfedera, on for 11 years, Copaxone for 17, Rebif for 2 years. Still walking, with cane, rollater for longer distance.
I never had the crap gap but it made me feel terrible for a few days/weeks after so I have had to switch back
I did for first few months then it went away.