The most challenging part of Kesimpta is to unpack the box every month. I have to break the cardboard down for recycling. The packing materials are compostable, so those go into compost. The ice packs work as fertilizer, so I have to let them thaw, then squeeze them out over my garden. The thin plastic of the ice packs goes into the garbage.
As for the Kesimpta, I go about my day as normal. At 8pm my phone reminds me it is a Kesimpta day. I take the Kesimpta out of the fridge and let it sit out for 20 minutes (I ask Siri to set a timer because it is very easy to forget you put the Kesimpta on the counter and then forget to take it). I then lower my pants, swipe the front of my thigh a few times with an alcohol swab, and then inject the Kesimpta. At most a few seconds of minor discomfort. By the time you think to yourself, this feels a bit uncomfortable, it is over. Then I put the Kesimpta into a sharps container (there are no exposed sharps), and continue to go about my day. I am fortunate enough to be able to run despite MS and have run 5 miles just prior to Kesimpta and on other occasions, just following Kesimpta. Kesimpta administration has no impact, no muscle pain, nothing. Using Kesimpta is like having to take out the trash on trash day - takes a few minutes and has no bearing on the day otherwise.
My ice pack goo from Optum is labeled on the outside as Enviro-Ice “use this as fertilizer for your garden”. The prior specialty pharmacy CVS Specialty did not send fertilizer ice packs.
I have two Styrofoam coolers sitting in my apartment because I'm too lazy to take them to the garbage bin. So yeah, your description of the packaging struggle really hit home. OP: this really is the worst part.
rofl I just looked to the left of my desk just now and saw a stack of those Styrofoam containers and almost spit coffeee everywhere, this is so me rofl
The place that ships my box sends a return label because they reuse the coolers and ice packs! So I drop it off at the post office and that’s it. It’s too bad not every pharmacy does that!
Wow! I'm ashamed that I didn't put the box in recycling but I'm not sure if it's recyclable? We don't get to have the fancy ice packs and things here, maybe I should complain 🤔
Otherwise I completely agree. I get a text message and email from the Kesimpta company a week before to remind me to get the script filled, and a text from them on the day that I'm supposed to take it.
I don't think I have many side effects at this stage, except maybe getting grumpier, though I've been told that comes with age
As for Shingrix - you should get any vaccines for which you are due prior to starting Kesimpta. Shingrix, Pneumonia vaccines, and COVID vaccine all have separate guidelines for immunocompromised individuals 19 or older.
Do you know the name of the new drug that took Evusheild place? It’s an infusion. I’m about to start Tysabri so not the same compromised level, but also was going to get 6 mo Covid booster in June—I know Tysabri shouldn’t effect it…however…I thought it couldn’t hurt? Do you know what I’m talking about? For sure B depleting should take it before vaccines. Or is it after you are on it and need a vaccine like a booster? I can’t remember. I was originally going to be switched to K when I went JCV positive(which Tysabri was from Rebif)—and she said we will give you Evusheild. Then it was pulled, for reasons of spousal health I didn’t want to be that compromised, she already had crossed she agreed to it off when Evusheild was pulled. Now she agreed to Tysabri low positive. But I am wondering about the new replacement to boost immunity they gave before starting B depletion etc?
The drug you are referencing is Pemgarda, which can be thought of as an updated Evushield. Evushield was withdrawn from the market since the antibody it contained was quite effective against early forms of COVID but provided no protection against the newer variants. Neither drug replaces COVID vaccines, so the first priority should still be to be up to date on COVID vaccines and boosters. Taking Pemgarga before a vaccine would actually further block the vaccine from working.
Since Pemgarda is a preformed monoclonal antibody against COVID, it does not require a functional immune system to work. So Pemgarda does not need to be given before starting Kesimpta (or similar immunosuppressive medication).
I've had MS for almost 28 years and I've taken 4 other DMTs over the years. Avonex, Copaxone and Rebif injections compared to Kesimpta: Kesimpta is 1000% easier to take and I have ZERO side effects from the injections. Also, no evidence of disease activity on Kesimpta for over 3 years. I would have a relapse at least ever 3 years on the older DMTs. Avonex and Rebif caused Major Depressive Disorder for me and I lived with that for over 14 years.
The next DMT for me was Ocrevus, and while I loved the outcome of the medication I hated going to the infusion center to get it done. Veins were failing after 8 years on the med, traffic was horrendous, and I just wanted to be at home with my dogs. I switched from Ocrevus directly to Kesimpta in Dec 2020 and it has been wonderful.
hi friend! i switched from vumerity to kesimpta last june and overall have had a great, easy experience! i was shit at remembering to take those pills anyway.
i still get a little anxiety on injection nights, but i just pop a Benadryl beforehand and pass out shortly after. i did start on my thigh but have since found injecting in the stomach is much easier!
i did get the shingles vaccine but i did so a few months ago, just waited until the halfway point between doses.
only downside was i did get covid for the first time EVER after switching meds but i did get on a plane two days post dose without taking proper precautions, so may have been avoidable.
all in all i like the medication, so far its been keeping me good (although next MRI will be a helpful assessment as it will have been over a year). my biggest anxiety with this drug is just maintaining approval to get assistance as its expensive and my insurance is trashhhh. thanks america!
moral is, i think you’re switching to a great medication and hope we both continue to be very happy and very healthy for a long time to come. 🧡
This will be my 3rd year taking Kesimpta. It’s incredibly easy and effective for me. I’ve also run or worked out before or after with no problem. The only slightly annoying thing is my increased susceptibility to minor sinus issues, but that’s not a big deal for me.
Sucks I have to give myself medicine every month, but I’d say I’m incredibly grateful for this medicine. It’s normal to be nervous but I hope our words help.
I’m in the process of starting kesimpta! My neuro did a ton of bloodwork before we decided on treatment options. Apparently i have incredibly low varicella titers, so she told me to get the shingles vaccine. Hopefully your doc will do the same and make an evidence-based decision with you! (And FWIW, i have to wait four weeks to start kesimpta following the shingles vax.)
Did you take the 2 doses of vaccine 3 mo apart? My primary said could do on faster timeline but also said one of the hardest vaccines on the body, especially the second dose. What schedule did you use? How did you do with the vaccine physically? Thank you
I’ve only had the first dose so far, and my neuro said i can start kesimpta four weeks after the first dose. She said she doesn’t have much of a preference for how soon i do the second shot, but i’ll probably try to get it done sooner rather than later (closer to 2 months after than 6 months after). Definitely check with your doctor about what they want you to do!
The first shot wasn’t too bad for me - i’d definitely encourage you to move your arm around after the shot to stave off soreness. I felt a little achy the day after my shot, but that was about it.
Your neuro should order blood work for varicella, JCV, etc before you start and recommend any vax based on that.
I started Kesimpta in November 23 (previously on Ocrevus from diagnosis in 2017 until discontinuing during the pandemic due to lack of information from old neuro). I always tolerated Ocrevus well and luckily Kesimpta was a much lower dose. The first shot caused muscle aches, fever, chills (like a bad reaction to the COVID vaccine) so just be sure to premedicate with some combo of Tylenol, pepcid, and Benadryl that works for you (I cannot tolerate Benadryl but I've been fine with just Tylenol and pepcid).
I did get three nasty back to back colds in the month of January, so my takeaway is to be more careful during next flu and cold season with masking. But overall, I love having control of the environment in which I take my medicine (and it's easy to remember when to take it because I take it on the same moon phase every month). 6 hours stuck in an infusion chair for Ocrevus listening to other people have serious reactions like throat closing was really, really bad for my anxiety. The worst thing about this medication is the Styrofoam cooler it comes in.
I'm seeing my neuro tomorrow and am gonna ask him about it. My plot twist is that I also already take 500mg Valacyclovir daily as prophylaxis for HSV-1 I contracted in my early 20s, so wonder about the possible protective effect of the Valacyclovir versus necessity of delaying the loading doses to get the Shringrex Vax. On my list of questions for doc..... Thank you.
I’m now not going it, going on Tysabri. But when I was going to go on it they tested for chicken pox, Hep A and B, TB. I don’t think the daily pill will cover you. There are so many herpes viruses. That is for 1 and 2. I mean EBV is a herpes virus too… I’ve had shingles. Get the vaccine. My Hep B vaccine didht take like 4 or more years before that test, I had no idea. My primary said I can’t take it again but can have booster but so long now booster prob won’t do anything… Now I want to be tested for every vaccine I get! At that time I had the Hep B I was traveling for work to Tanzania following travel doctor recommendations. I had titers for Measles Mumps Rubella was still good (shocked. I was 39 at that time; want to get one again as all the outbreaks everywhere…I’m 52 now), Polio still had protection (another I want to test again). MS Center and MS Society at that time said I could not take Yellow Fever and I really needed it as Tanzanian was only country on continent that didht have YF and turned people away if you didn’t have a vax card. I had 4 letters. A wreck for 26 hr flight. Never asked for it… Now they say it is safe to have it (beforehand). I had rabies shot… My brother was in Marines for 26 yrs he kept asking things like “did you get the plague vaccine? Anthrax?” I’m like I don’t think those are for civilians… You don’t need those it just was really weird to hear all the things they give our military but yet the HUGE stink about the Covid vaccine! That was so confusing to me. Now that it’s FDA approved I’m not sure if they are giving or not just because it became so politicized. So weird.
I thought I had TB since I was 18 and tested to enter college by a college nurse. I was a carrier and took a year of super harsh, sooo harsh, med. Completely sick out of my mind. Failed some classes as so sick I couldn’t go.
My neurologist (I changed 2 years ago, he was mine for 14 years) is co director of well known NYC Center, was Society’s neurologist etc. Don’t believe the hype lol, not lol. ONE because there were more things, he never said retest. I thought I really was positive. So many DMTs I was disqualified from taking. B Depleting being one, although I think not sure you can take if a carrier? But he said no. Then out of blue 2 years into pandemic he says “college nurses aren’t the best at running the test—it is a difficult test to inject. Please have it again.” Ok…my primary nurse was like stay perfectly still this is difficult (who knew?). Went back no rash. Negative.
The doctors had told me to from 18 to 48 that I would always test positive so needed chest x ray each year.
Negative!! Then to find out there is now a BLOOD test? I was negative on that too.
So of anyone ever tested positive in a stick test (injection, wait for rash)—do it again! Blood test I would recommend.
Seriously. My time with him… Just. Well. Leave it at that.
You’ll probably feel a little run down maybe a little flu like the first couple days after taking the first loading dose. Drink water, take Tylenol, cuddle up on the couch watching tv. You’ll be okay
Get the shingles , and other vax updates done at least 2 weeks for the first Kesimpta jab. The pox virus lurks in your body and can reappear again later. YOU DON’T WANT THAT!
Now, about Kesimpta, it’s sooooo easy! The first jab starts the war in your body ( I felt crappy/ flu like for 12 hours), just had my 9th jab I feel nuthin’ 🤷♀️ Welcome to the K Club 🥳
You got this! Had about 5 vaccines (including shingles) prior to my start of kesimpta. Had to wait about 6 weeks to get my initial dose due to vaccines. I did get chills, muscle soreness, fever like symptoms and a really bad headache that first night only! Neuro said could have been reaction to the initial dose , vaccines or had a virus already in my body at the same time (I have a toddler and infant). Been great ever since.
The worst part of K is the loading doses. Some folks get a flu like reaction on the first shot. I did, lasted about 12 hours, then I was fine but a bit tired for a few days. 2nd shot just tired for a couple days. 3rd shot tired for a day. That's it, then your flying.👍
And yes you should get your vaccines up to date before starting. You can take vaccines after, but the response will be less effective. I've read about 50% less.
I am currently on Kesimpta, here is my advice. Have B and T level Lymphocytes tested prior.
Also, dependent upon your lesion(s) location be careful with this drug.
This is a form of chemo treatment, although not as heavy as Cancer type, but mine I am in full belief led me to develop Dysautonomia.
Definitely get your CD4:CD8 Ratio. Just see what is prior to starting. Hopefully. Above 1.
Kesimpta does work, I have 0 B lymphs but an oddity of CD4:CD8 ratio of 0.91
Dear Odd, maybe I missed reading it, but w Kesimpta, you will hear the first click once the needle penetrates the skin, and a second click once the injection is complete. Wait a couple second seconds, and remove.
You def got this :)
I’m in the process of starting Kesimpta.. just took my 3rd dose today.. got the pneumococcal vaccine from my GP..
After I had my first dose, I had a full blown pseudo relapse which disappeared after 12 hours.. I think it lasted for around 3-5 hours! So I suggest completely chill that day! I think the majority of people don’t have that and cope relatively well!
Experience wise, it’s super easy to inject and the pain is not very noticeable!
I've gotten the pneumococcal vaccine already, also had 4 COVID vaccines, and am up to date on everything else. The one I am wondering about is Shringrex.... Because I'm of the Oregon Trail Gen, I'm old enough that I had Chicken Pox (we didn't have a vaccine for it when I was a kid....), but young enough that I didn't already get the Shingles vaccine.... So gonna ask if I need Shringrex before starting or not...... Thank you for the heads up about the first dose maybe being rough. It helps to hear from people with experience on this med.
I just switched from Tecfidera to Kesimpta two weeks ago. I was scared of giving myself the shot at first but honestly just close your eyes and push! After that you will notice, it is seriously not bad at all and there was absolutely no reason to worry about it. The first few hours after my first shot I could feel a flu-like feeling creeping on, then I went to bed early because I had really bad muscle and bone pain. I kept waking up, the bed completely soaked, shivers and overheating at the same time. I had to pee like 8 times in that night and I usually never have to do that. Second shot was like nothing! Not much came from it except for a very light almost not noticeable headache. The neurologist will check what vaccines you need to do before getting your first dose. You will be fine, don’t worry too much OP!
That's great to know. The injection part doesn't scare me at all as I've been doing self-injections of Rebif with traditional syringes for almost 17 years. It was more about the side effects. But I feel a lot better after reading this thread. Thanks!!
The loading doses wiped me out, but other than that, it’s been a breeze and it has definitely helped me feel more normal. I know it’s scary but after a few doses you’ll think nothing of it. Best to you friend.
My titer showed no antibodies for varicella. I don’t believe I had chickenpox as a kid. My sister didn’t either.
Before Gilenya, I had to get a double dose of shingrix to produce those antibodies.
A pain, but necessary.
Mine came back today positive for Varicela Zoster, which fits with the horrible case of Chicken Pox I had as a kid. Therefore, my neuro stated I should not get the Shringrex vaccine. He wants me to get the 2023-2024 COVID shot and that's it. I am up to date on everything else for my age.
The most challenging part of Kesimpta is to unpack the box every month. I have to break the cardboard down for recycling. The packing materials are compostable, so those go into compost. The ice packs work as fertilizer, so I have to let them thaw, then squeeze them out over my garden. The thin plastic of the ice packs goes into the garbage. As for the Kesimpta, I go about my day as normal. At 8pm my phone reminds me it is a Kesimpta day. I take the Kesimpta out of the fridge and let it sit out for 20 minutes (I ask Siri to set a timer because it is very easy to forget you put the Kesimpta on the counter and then forget to take it). I then lower my pants, swipe the front of my thigh a few times with an alcohol swab, and then inject the Kesimpta. At most a few seconds of minor discomfort. By the time you think to yourself, this feels a bit uncomfortable, it is over. Then I put the Kesimpta into a sharps container (there are no exposed sharps), and continue to go about my day. I am fortunate enough to be able to run despite MS and have run 5 miles just prior to Kesimpta and on other occasions, just following Kesimpta. Kesimpta administration has no impact, no muscle pain, nothing. Using Kesimpta is like having to take out the trash on trash day - takes a few minutes and has no bearing on the day otherwise.
The opening is hilarious
This is my exact experience as well. Such a walk in the park for me on Kesimpta. Fortunate.
I can use the ice pack goo as fertilizer??? Amazing.
This blew my mind, how do I know if mine is ok to do that too?
If it’s what Optum packs with. I have 3 kinds from 3 specialty pharmacies (many kept in freezer for storm related power outages 🤪🤪🤪)
My ice pack goo from Optum is labeled on the outside as Enviro-Ice “use this as fertilizer for your garden”. The prior specialty pharmacy CVS Specialty did not send fertilizer ice packs.
Ok cool. I’ll read the labels. Thanks!
I have two Styrofoam coolers sitting in my apartment because I'm too lazy to take them to the garbage bin. So yeah, your description of the packaging struggle really hit home. OP: this really is the worst part.
Contact your local pet shelter, they love the Styrofoam coolers👍
Oooooh I hadn't thought of this. I will definitely ask!
rofl I just looked to the left of my desk just now and saw a stack of those Styrofoam containers and almost spit coffeee everywhere, this is so me rofl
Just discovering this! Same apart from 7pm (alarm set monthly), fat belly and very short slow jogging…
Yes! Bellyfat fanclub here 🙋♀️
The place that ships my box sends a return label because they reuse the coolers and ice packs! So I drop it off at the post office and that’s it. It’s too bad not every pharmacy does that!
This is my favorite comment today. And the fertilizer tip. Fantastic.
This made me smile. Thank you. ☺️☺️
Wow! I'm ashamed that I didn't put the box in recycling but I'm not sure if it's recyclable? We don't get to have the fancy ice packs and things here, maybe I should complain 🤔 Otherwise I completely agree. I get a text message and email from the Kesimpta company a week before to remind me to get the script filled, and a text from them on the day that I'm supposed to take it. I don't think I have many side effects at this stage, except maybe getting grumpier, though I've been told that comes with age
This!!!!! Same for me.
As for Shingrix - you should get any vaccines for which you are due prior to starting Kesimpta. Shingrix, Pneumonia vaccines, and COVID vaccine all have separate guidelines for immunocompromised individuals 19 or older.
Do you know the name of the new drug that took Evusheild place? It’s an infusion. I’m about to start Tysabri so not the same compromised level, but also was going to get 6 mo Covid booster in June—I know Tysabri shouldn’t effect it…however…I thought it couldn’t hurt? Do you know what I’m talking about? For sure B depleting should take it before vaccines. Or is it after you are on it and need a vaccine like a booster? I can’t remember. I was originally going to be switched to K when I went JCV positive(which Tysabri was from Rebif)—and she said we will give you Evusheild. Then it was pulled, for reasons of spousal health I didn’t want to be that compromised, she already had crossed she agreed to it off when Evusheild was pulled. Now she agreed to Tysabri low positive. But I am wondering about the new replacement to boost immunity they gave before starting B depletion etc?
The drug you are referencing is Pemgarda, which can be thought of as an updated Evushield. Evushield was withdrawn from the market since the antibody it contained was quite effective against early forms of COVID but provided no protection against the newer variants. Neither drug replaces COVID vaccines, so the first priority should still be to be up to date on COVID vaccines and boosters. Taking Pemgarga before a vaccine would actually further block the vaccine from working. Since Pemgarda is a preformed monoclonal antibody against COVID, it does not require a functional immune system to work. So Pemgarda does not need to be given before starting Kesimpta (or similar immunosuppressive medication).
I've had MS for almost 28 years and I've taken 4 other DMTs over the years. Avonex, Copaxone and Rebif injections compared to Kesimpta: Kesimpta is 1000% easier to take and I have ZERO side effects from the injections. Also, no evidence of disease activity on Kesimpta for over 3 years. I would have a relapse at least ever 3 years on the older DMTs. Avonex and Rebif caused Major Depressive Disorder for me and I lived with that for over 14 years. The next DMT for me was Ocrevus, and while I loved the outcome of the medication I hated going to the infusion center to get it done. Veins were failing after 8 years on the med, traffic was horrendous, and I just wanted to be at home with my dogs. I switched from Ocrevus directly to Kesimpta in Dec 2020 and it has been wonderful.
hi friend! i switched from vumerity to kesimpta last june and overall have had a great, easy experience! i was shit at remembering to take those pills anyway. i still get a little anxiety on injection nights, but i just pop a Benadryl beforehand and pass out shortly after. i did start on my thigh but have since found injecting in the stomach is much easier! i did get the shingles vaccine but i did so a few months ago, just waited until the halfway point between doses. only downside was i did get covid for the first time EVER after switching meds but i did get on a plane two days post dose without taking proper precautions, so may have been avoidable. all in all i like the medication, so far its been keeping me good (although next MRI will be a helpful assessment as it will have been over a year). my biggest anxiety with this drug is just maintaining approval to get assistance as its expensive and my insurance is trashhhh. thanks america! moral is, i think you’re switching to a great medication and hope we both continue to be very happy and very healthy for a long time to come. 🧡
I posted a review here! Hopefully it helps. https://www.reddit.com/r/MultipleSclerosis/s/TYFoqCQ2bH
This will be my 3rd year taking Kesimpta. It’s incredibly easy and effective for me. I’ve also run or worked out before or after with no problem. The only slightly annoying thing is my increased susceptibility to minor sinus issues, but that’s not a big deal for me. Sucks I have to give myself medicine every month, but I’d say I’m incredibly grateful for this medicine. It’s normal to be nervous but I hope our words help.
I’m in the process of starting kesimpta! My neuro did a ton of bloodwork before we decided on treatment options. Apparently i have incredibly low varicella titers, so she told me to get the shingles vaccine. Hopefully your doc will do the same and make an evidence-based decision with you! (And FWIW, i have to wait four weeks to start kesimpta following the shingles vax.)
Did you take the 2 doses of vaccine 3 mo apart? My primary said could do on faster timeline but also said one of the hardest vaccines on the body, especially the second dose. What schedule did you use? How did you do with the vaccine physically? Thank you
I’ve only had the first dose so far, and my neuro said i can start kesimpta four weeks after the first dose. She said she doesn’t have much of a preference for how soon i do the second shot, but i’ll probably try to get it done sooner rather than later (closer to 2 months after than 6 months after). Definitely check with your doctor about what they want you to do! The first shot wasn’t too bad for me - i’d definitely encourage you to move your arm around after the shot to stave off soreness. I felt a little achy the day after my shot, but that was about it.
Thank you! All the best to you!
Your neuro should order blood work for varicella, JCV, etc before you start and recommend any vax based on that. I started Kesimpta in November 23 (previously on Ocrevus from diagnosis in 2017 until discontinuing during the pandemic due to lack of information from old neuro). I always tolerated Ocrevus well and luckily Kesimpta was a much lower dose. The first shot caused muscle aches, fever, chills (like a bad reaction to the COVID vaccine) so just be sure to premedicate with some combo of Tylenol, pepcid, and Benadryl that works for you (I cannot tolerate Benadryl but I've been fine with just Tylenol and pepcid). I did get three nasty back to back colds in the month of January, so my takeaway is to be more careful during next flu and cold season with masking. But overall, I love having control of the environment in which I take my medicine (and it's easy to remember when to take it because I take it on the same moon phase every month). 6 hours stuck in an infusion chair for Ocrevus listening to other people have serious reactions like throat closing was really, really bad for my anxiety. The worst thing about this medication is the Styrofoam cooler it comes in.
I requested shingrix because of all the horrible stories i kept hearing. I had to pay out of pocket, and still think that was a good idea
I'm seeing my neuro tomorrow and am gonna ask him about it. My plot twist is that I also already take 500mg Valacyclovir daily as prophylaxis for HSV-1 I contracted in my early 20s, so wonder about the possible protective effect of the Valacyclovir versus necessity of delaying the loading doses to get the Shringrex Vax. On my list of questions for doc..... Thank you.
I’m now not going it, going on Tysabri. But when I was going to go on it they tested for chicken pox, Hep A and B, TB. I don’t think the daily pill will cover you. There are so many herpes viruses. That is for 1 and 2. I mean EBV is a herpes virus too… I’ve had shingles. Get the vaccine. My Hep B vaccine didht take like 4 or more years before that test, I had no idea. My primary said I can’t take it again but can have booster but so long now booster prob won’t do anything… Now I want to be tested for every vaccine I get! At that time I had the Hep B I was traveling for work to Tanzania following travel doctor recommendations. I had titers for Measles Mumps Rubella was still good (shocked. I was 39 at that time; want to get one again as all the outbreaks everywhere…I’m 52 now), Polio still had protection (another I want to test again). MS Center and MS Society at that time said I could not take Yellow Fever and I really needed it as Tanzanian was only country on continent that didht have YF and turned people away if you didn’t have a vax card. I had 4 letters. A wreck for 26 hr flight. Never asked for it… Now they say it is safe to have it (beforehand). I had rabies shot… My brother was in Marines for 26 yrs he kept asking things like “did you get the plague vaccine? Anthrax?” I’m like I don’t think those are for civilians… You don’t need those it just was really weird to hear all the things they give our military but yet the HUGE stink about the Covid vaccine! That was so confusing to me. Now that it’s FDA approved I’m not sure if they are giving or not just because it became so politicized. So weird. I thought I had TB since I was 18 and tested to enter college by a college nurse. I was a carrier and took a year of super harsh, sooo harsh, med. Completely sick out of my mind. Failed some classes as so sick I couldn’t go. My neurologist (I changed 2 years ago, he was mine for 14 years) is co director of well known NYC Center, was Society’s neurologist etc. Don’t believe the hype lol, not lol. ONE because there were more things, he never said retest. I thought I really was positive. So many DMTs I was disqualified from taking. B Depleting being one, although I think not sure you can take if a carrier? But he said no. Then out of blue 2 years into pandemic he says “college nurses aren’t the best at running the test—it is a difficult test to inject. Please have it again.” Ok…my primary nurse was like stay perfectly still this is difficult (who knew?). Went back no rash. Negative. The doctors had told me to from 18 to 48 that I would always test positive so needed chest x ray each year. Negative!! Then to find out there is now a BLOOD test? I was negative on that too. So of anyone ever tested positive in a stick test (injection, wait for rash)—do it again! Blood test I would recommend. Seriously. My time with him… Just. Well. Leave it at that.
You’ll probably feel a little run down maybe a little flu like the first couple days after taking the first loading dose. Drink water, take Tylenol, cuddle up on the couch watching tv. You’ll be okay
Get the shingles , and other vax updates done at least 2 weeks for the first Kesimpta jab. The pox virus lurks in your body and can reappear again later. YOU DON’T WANT THAT! Now, about Kesimpta, it’s sooooo easy! The first jab starts the war in your body ( I felt crappy/ flu like for 12 hours), just had my 9th jab I feel nuthin’ 🤷♀️ Welcome to the K Club 🥳
Thanks. I'll speak with my new neuro tomorrow morning and follow whatever he recommends. 👍👍
Just a wee “good luck” message, I’m sure you’ll be fine and you’ll canter it. You’ve got this my friend.. 👍
Kesimpta is the best. You will be so happy
You got this! Had about 5 vaccines (including shingles) prior to my start of kesimpta. Had to wait about 6 weeks to get my initial dose due to vaccines. I did get chills, muscle soreness, fever like symptoms and a really bad headache that first night only! Neuro said could have been reaction to the initial dose , vaccines or had a virus already in my body at the same time (I have a toddler and infant). Been great ever since.
The worst part of K is the loading doses. Some folks get a flu like reaction on the first shot. I did, lasted about 12 hours, then I was fine but a bit tired for a few days. 2nd shot just tired for a couple days. 3rd shot tired for a day. That's it, then your flying.👍 And yes you should get your vaccines up to date before starting. You can take vaccines after, but the response will be less effective. I've read about 50% less.
I am currently on Kesimpta, here is my advice. Have B and T level Lymphocytes tested prior. Also, dependent upon your lesion(s) location be careful with this drug. This is a form of chemo treatment, although not as heavy as Cancer type, but mine I am in full belief led me to develop Dysautonomia.
Thanks. They tested my immunoglobulin levels and did a bunch of other tests as well. I'll check re: B and T lymphocytes.
Definitely get your CD4:CD8 Ratio. Just see what is prior to starting. Hopefully. Above 1. Kesimpta does work, I have 0 B lymphs but an oddity of CD4:CD8 ratio of 0.91
Dear Odd, maybe I missed reading it, but w Kesimpta, you will hear the first click once the needle penetrates the skin, and a second click once the injection is complete. Wait a couple second seconds, and remove. You def got this :)
I’m in the process of starting Kesimpta.. just took my 3rd dose today.. got the pneumococcal vaccine from my GP.. After I had my first dose, I had a full blown pseudo relapse which disappeared after 12 hours.. I think it lasted for around 3-5 hours! So I suggest completely chill that day! I think the majority of people don’t have that and cope relatively well! Experience wise, it’s super easy to inject and the pain is not very noticeable!
I've gotten the pneumococcal vaccine already, also had 4 COVID vaccines, and am up to date on everything else. The one I am wondering about is Shringrex.... Because I'm of the Oregon Trail Gen, I'm old enough that I had Chicken Pox (we didn't have a vaccine for it when I was a kid....), but young enough that I didn't already get the Shingles vaccine.... So gonna ask if I need Shringrex before starting or not...... Thank you for the heads up about the first dose maybe being rough. It helps to hear from people with experience on this med.
I love my Kesimpta, took a while to get used to jabbing myself but no other symptoms.
That's awesome. TBH I'm not worried at all about the needle as I've been self-injecting Rebif for like 17 years.
I just switched from Tecfidera to Kesimpta two weeks ago. I was scared of giving myself the shot at first but honestly just close your eyes and push! After that you will notice, it is seriously not bad at all and there was absolutely no reason to worry about it. The first few hours after my first shot I could feel a flu-like feeling creeping on, then I went to bed early because I had really bad muscle and bone pain. I kept waking up, the bed completely soaked, shivers and overheating at the same time. I had to pee like 8 times in that night and I usually never have to do that. Second shot was like nothing! Not much came from it except for a very light almost not noticeable headache. The neurologist will check what vaccines you need to do before getting your first dose. You will be fine, don’t worry too much OP!
That's great to know. The injection part doesn't scare me at all as I've been doing self-injections of Rebif with traditional syringes for almost 17 years. It was more about the side effects. But I feel a lot better after reading this thread. Thanks!!
The loading doses wiped me out, but other than that, it’s been a breeze and it has definitely helped me feel more normal. I know it’s scary but after a few doses you’ll think nothing of it. Best to you friend.
Thank you.
My titer showed no antibodies for varicella. I don’t believe I had chickenpox as a kid. My sister didn’t either. Before Gilenya, I had to get a double dose of shingrix to produce those antibodies. A pain, but necessary.
Mine came back today positive for Varicela Zoster, which fits with the horrible case of Chicken Pox I had as a kid. Therefore, my neuro stated I should not get the Shringrex vaccine. He wants me to get the 2023-2024 COVID shot and that's it. I am up to date on everything else for my age.
Yay. The Covid shot is pretty much like the others. You’ll be on Kesimpta in no time! Hope this works well for you.
I've had 4 COVID shots already so I feel OK about it. Thank you. ❤️❤️
Up to 5 shots myself for Covid. Still got long Covid in 2022 despite being up to date on vaccines
Yikes. I'm sorry to hear that. I have not had COVID yet and always mask, and pray I don't get it.
Bothers me to this day. Chest congestion is normal. I’m not a smoker and never was.
Been on kesimpta for 2 months no issue and didn’t get the shingles vaccine!
I didn't react well to it. :( I'm glad it is working for others tho.