Hey Cliff, I've been on Ocrevus since March 2018 and it is working for me. No side effects or crap gap and no new lesions, no active lesions and disease stability. I've been on the rapid protocol(2hr) for my last 3 infusions. I'm glad Kesimpta is working for you.
I was on Ocrevus for 2 years and got sick of sitting through the long infusion time. I thank God that i felt zero side effects but have been on Wals diet and have since quit any dmts. I have lost weight and lowered my blood pressure without drugs. Doctors are very impressed with my progress. My ms has not progressed at all. For now, im staying drug free to see where i end up. So far on the right track with Dr's blessings 👍🏼
Just diagnosed with Clinically Isolated Syndrome in October after having an attack back in February. Neurologist recommended Kesimpta as being most effective at slowing or even halting CIS from potentially turning into relapsing MS. Have no problem taking it, it's just the stress of dealing with all the bureaucracy of setting up getting it. I'm more stressed about dealing with all the paperwork getting set up to get it. But I'm hoping by mid December I will be taking my first one.
You nailed it. Taking it is simple compared to getting it. I spent an hour on the phone yesterday with the pharmacy to get everything sorted out. This after communicating with the clinic, the pharmacy, and the insurance for over a week and a half. There are definitely too many players involved. Good luck with your journey, sounds like you might have caught it in time.
I’m so pleased to have found your video; I have been on Ocrevus for the last year, and it’s been awful!!! I am so unwell!!! I can’t take this anymore!!! 😔😔😔 now, I am looking to start on Kesimpta in the next 3 weeks, and I’m hoping the side effects will be less severe and my body will handle the medication better.
I has worked really well for me. I hope you have the same experience and better. As I mentioned in the video, the ramp up on Kesimpta was a little rough but it definitely got a lot better over time. Good luck and please keep me updated if you make the switch.
I’ve been considering switching to Kesimpta too for similar reasons, but I’ve been doing well on Ocrevus for 2 years. After the first year I didn’t notice much of a crap gap, but I definitely feel when I’m due for another infusion. I’m holding out hope for the upcoming BTK inhibitors to be as effective without suppressing the immune system.
Thanks for the feedback. Yes, the BTK stuff looks super interesting. I've been listening to @realtalkms, Jon is great at staying on top of it. Weird how the gap creeps up after a while. I didn't notice it at first either. Have a great day! Appreciate you!
Ty so very much for your video! I know what it was like having the “crap gap” when I was on tysabri which was an infusion once a month the third week was terrible for me! Btw it’s Heath from the Facebook post I put out today!
Ive been on Ocrevus for 6 years and haven't experienced anything negative. I can see how just sitting there for 7 hours would be boring. My infusion time is about 4 hours. I usually spend this time meditating and working on the computer or reading a book or watching TV. All the infusion chairs have a built in TV at my facility.
Ohh The built in TV is nice!! The small room with beige walls is not exactly exciting. :) Thanks for sharing! Great to hear that you are doing will on Ocrevus!
Thanks for the video. I was always curious about the different experiences of Kesimpta vs Ocrevus. I've been on Ocrevus for 7 years with no problem. Actually, my MS symptoms reduced over the years and no new lesions or relapses. No crap gap. No side effects except from the steroids they give before infusion. I have to take a sleeping pill to sleep the night after each dose. Not taking the steroids would be a big plus. As for the infusion, I started with the five hour infusion. But a few years ago, they introduced the fast infusion that only takes two hours. It's still two hours. I'm very lucky that my clinic is a 10 minute walk from home. Oh, and there is now Ocrevus Zunovo. It's the same drug but as a subcutaneous injection that lasts 10 minutes. You still need a nurse to administer it. It's been aproved in Europe and the US. Finally, just a little correction, Ocrevus and Kesimpta don't block the CD20 protein. They both basically attach to the CD20 protein that only exists on mature B lymphocytes and kills these lymphocytes. In other words, the CD20 is a way for the drug to only kill the B lymphocytes and no other cell. The way they kill them is very slightly different, but the result is the same: you end up killing all the B lymphocytes. Another difference between Ocrevus and Kesimpta is that Ocrevus is approved for progressive MS. Kesimpta is not. Not that it's not or less effective against progression. It's just that it was not tested on patients that have PPMS. So insurance companies might give you trouble if you try to get Kesimpta if you have PPMS or SPMS. Anyhoo, thanks for the video and best of luck with your MS !!!
Thanks for the comment and feedback! It's great to hear that you aren't having issues with the crap gap! and no noticeable progression! That's awesome! Thank you again!
Im off kisempta bc of side effects next day after shot felt like a got hit by a bus and more upper respiratory infections. Asked nero and i both agreed i haven't any flares in over 10yrs. And im also 64. So im going off
Thanks for the video. I’m on Ocrevus and it’s a pain in the ass to fight the insurance companies I’m sure you’re familiar. Ad that’s for anything we need. I like the fact that it’s only every 6 months and I’m also on the rapid infusion.
Thanks for the feedback. Yes, the once every six months was nice. I am happy to hear that you can handle the rapid infusion. That makes a big difference. Keep on' Keepin' on!
Hi Cliff I have been on ocrevus for 2 years but the past 6 months like straight after last infusion I have been ill with everything other then Ms symptoms.. Hospitalised 3 times.. At 6 month mark my bloods just passed to get it done again… I have decided to not take anything until my bloods are back up and my horrible chest infection has cleared.. This is the worse I have felt.. My neuro wants to start me on Mavenclad so not to deplete my immune system.. I will wait another 2 months see where my mri scan and symptoms are.. I was due for my ocrevus dose Monday.. Thanks for the info on Kesimpta my anxiety went up listening to how hard it is to inject yourself and again immune depleting stuff it does.. I wasn’t leaving home and caught everything and I am ocd in cleanliness, diet and supplements.. It’s so hard I’m 52.. lesions in my brain only..
Sorry to hear about your situation. I have a friend that got a respiratory infection while on Tysabri. He has been battling the infection for 7 months. I think he's going to take a drug holiday to see if he can clear the lung scum. Believe me when I say that the self injection gets much easier every time you do it. Keep me posted. Thanks for the comment!
@@partofyoursquirrel the big issue with Kesimpta is being immune suppressed. Longer recovery from viruses and infection coupled with catching them more often, may make being an active athlete difficult.
I don't know if you've heard about and/or considered Mavenclad, but if you're an insurance will cover it I don't remember the exact statistics but it was either 40% of people get 70% better or 70% of people get 40% better. Either way pretty impressive. I have MS too, but unfortunately my insurance doesn't cover that and I don't qualify for any type of help with that specific drug unfortunately or else I'd be switching myself. I do notice that the doctors heavily suggest infusions though although I have been on oral treatment only for the entire 10 years since I've been diagnosed. I can't necessarily say that his work is well as I would have liked it to, but not everything works for everyone the same way I guess and I myself don't have it in me to get an infusion or give myself a shot so it was basically oral or nothing at all. Best of luck to you.
Thank you for the comment! I did discuss Mavenclad with my doctor when I ditched Ocrevus and before Kesimpta was approved and released. I certainly haven't ruled it out. It would be nice to be done with this DMT stuff. I find myself yet again playing phone tag between my dr., the phramacy, and the insurance to get my next dose of Kesimpta. It never seems to be easy although I would THINK it's routine for everyone else involved in the process. Have a great weekend and Thank you again!
I'm going to start delaying the time between each ocr infusion and monitor with labs. With the thought that I'll hopefully be taking in less drug over the course of my life
Ocrevus... stopped as head sweating even at -40C. Kesimpta.... 3 week start... cold/flu symptoms so bad and nothing stopped them ..the mucus was unreal! just so draining... never made it to monthly doses.
Very well explained thanks for sharing my wife us in ocuervus infusions and it’s all true how you expressed your situation for her as well but she tried a similar injectors she hated it but I’m thinking if some cell therapy thanks
I’m on Kesimpta 1year and it’s definitely not working for me. I feel a severe progression, problems walking and using my hands. I’m switching to ocrelizumab hoping it will be better
Thank you for sharing! Good luck with your journey and I am saddened to read that it's not working. I guess we should be thankful that we live in a time of options. Have a great Sunday and thank you again!
I already do a monthly injection for migraines. I doubt that Kesimpta would be a problem that way. What I’d be concerned about is the immune suppression factor. Does the drug keep you in a permanent state of immune suppression? If it does, do you get sick with colds and other viruses more easily?
Hi, I'm not a doctor, so I'm only speaking from my personal experience and please don't use it as sound advice. In my experience, the Kesimpta hasn't been an issue with other infections. In fact, my family gets sick a lot while I do not.. I have a child in elementary and he brings home all kinds of stuff. I wash my hands a LOT and take a multivitamin. They usually get the flu and covid, while I don't. So who knows ( they were vax'd for both and so was I ).. I do have a friend who has been sick for like 6 months with a cough. They took him off his DMT until it clears up. Again, just my experience. Valid concern though!
The 6 mth gap is what worries me, I’m now concerned about kesimpta as I’ve been sick most of the 3yes, not MS related,& I’ve lost over @25kgs& can’t put weight back on ,I’m only @40kg& very little subcutaneous fat anywhere to inject into, I’ve had MS over 26yrs& I’ve done every sub cut drugs& never had problems because I was 25+ kgs heavier, thanks for your useful advice \ information, good luck
If it helps, I'm 6'3" and about 175 lbs, so not a lot of flab to grab and jab, but if I sit down, I can usually find enough around my mid section. It doesn't take much. The needle is very small. I'll make a video of how I do it and post it soon. It has made things a lot easier. Thanks for the comment! Have a great weekend!
I have heard until your immune system weakens enough for MS to no longer be an issue. Age 60+.. which for me means (if drug prices don't change), I'll be into it $2,160,000. Eeeks!
As a man with MS since 1996, I took a lot of mediciations, but now, since 2013, I'm on something called Coimbra Protocol, a treatment with high doses of vitamin D, created by a brazilian doctor. I strongly recomend you read about it.
Hey Cliff, what type of ms do you have? I’ve had 5 infusions of Ocrevus and the side effects during the infusions are still ruff. Takes me over 8 hrs to finish. I’ve been thinking of switching to Kesimpta. Dr thinks I might have PPMS but says it should work if I wanted to switch. My major hesitation is so far the Ocrevus seems to be working. Worried about switching and having worsening.
Hi Jeff, I have RRMS, however, according to my neuro, all MS is progressive and those particular dx classifications like RRMS and PPMS are mostly for insurance purposes. That's what I was told, BUT, I'm not a Dr. or Clinician so who knows.. I had the same issue with the infusions, they took FOREVER. If they cranked up the flow rate, I'd get instantly nauseous. I am very happy that I switched, especially when it comes to those insanely long infusion times and feeling like garbage for the next few days after. The Kesimpta did take some time to adjust to. The ramp up was rough, but now, Its not bad. I hope this feedback helps. Keep us updated! Have a great weekend! and thanks for the comment!!
Hi 😊 I started Kesimpta on Tuesday and ,I had the normal flu side effects,it's ok. But now I feel my heart often, a bit like I was an old man who had to pay attention to my heart all of a sudden... So I'd like to know if this is normal for the first injections and e'de much this rested but that it will pass or I will become tragile? I like to drink coffee and do sport (before Kesimpta I had no worries about that?). So I'm a bit scared :) I'd like your patient opinion 😊
Hi, I had that experience too! especially when I was laying down. Coffee definitely made it worse. I have had the heart thing as recently as earlier this month. It comes and goes. I hope this helps. One patient to another. Thanks for the comment!
@@NeuroNerdyX I'd love to know if it was more during your first injections; then I guess and hope it calms down? I don't see it as a side effect anywhere in writing so I'm glad to see someone who has also had the same thing; it must play on the heart. I hope it will go down because I only had my first injection on Tuesday, the second on Tuesday. You know the procedure for the first month, I'm not going to tell you. Hopefully, the problems with the heart will be minor and will disappear and not occur as a bad habit. Take care my brother
@@nicolaslefebvre1803 hi, it definitely seems to have calmed down, it only happens for a few days after the injection. I'll take note of it this time, I'm due to inject in a few days. I will certainly keep you updated to date! Thanks for sharing!
@@NeuroNerdyX I look forward to hearing from you :) I hope it goes well for you (and for me too lol ). Let's talk in a while :) tomorrow will be my second, my only worry is my heart, it's how can we say... Important? Entoucas it's been 6 days since my first Kesimpta and I can say that I have to be "careful" with my heart (I don't have any heart problems) and that I've been sleeping pretty badly since then. Is everything connected or do I need to rest a bit more this month? I don't know, we'll see ^^ see you soon and be well buddy 😋
@@NeuroNerdyX Hi, my second injection went well for the symptoms, I often feel my heart even 7 days later. I wonder if it's related to the Kesimpta or if it's a cause of the stress that the new treatment has generated 🤔 Clearly I think Kesimpta has something to do with it and I read about a guy who had to stop after a year (for serious heart problems) but this side effect very few people seem to talk about. So now I'm showering at my leisure and getting ready to do the 3rd Kesimpta. That's my news :p And how are you, my friend? What's new ? 😊
That's because the first ocrevus treatment is split in two doses ( two weeks apart) so the body adapts to the drug, but on the next one which is 6 months apart you'll get the full dose which will be around 6 hrs..
Hey Cliff, I've been on Ocrevus since March 2018 and it is working for me. No side effects or crap gap and no new lesions, no active lesions and disease stability. I've been on the rapid protocol(2hr) for my last 3 infusions. I'm glad Kesimpta is working for you.
@@BenLeitch that's awesome Ben! Happy to hear that it's working for you. Onward and upward! Thanks for the feedback!
I was on Ocrevus for 2 years and got sick of sitting through the long infusion time. I thank God that i felt zero side effects but have been on Wals diet and have since quit any dmts. I have lost weight and lowered my blood pressure without drugs. Doctors are very impressed with my progress. My ms has not progressed at all. For now, im staying drug free to see where i end up. So far on the right track with Dr's blessings 👍🏼
That's great! I think the DMTs have a bit of fatigue with them... if I'm remembering correctly. Great to hear that it's working for you!!!
Just diagnosed with Clinically Isolated Syndrome in October after having an attack back in February. Neurologist recommended Kesimpta as being most effective at slowing or even halting CIS from potentially turning into relapsing MS. Have no problem taking it, it's just the stress of dealing with all the bureaucracy of setting up getting it. I'm more stressed about dealing with all the paperwork getting set up to get it. But I'm hoping by mid December I will be taking my first one.
You nailed it. Taking it is simple compared to getting it. I spent an hour on the phone yesterday with the pharmacy to get everything sorted out. This after communicating with the clinic, the pharmacy, and the insurance for over a week and a half. There are definitely too many players involved. Good luck with your journey, sounds like you might have caught it in time.
I’m so pleased to have found your video; I have been on Ocrevus for the last year, and it’s been awful!!! I am so unwell!!! I can’t take this anymore!!! 😔😔😔
now, I am looking to start on Kesimpta in the next 3 weeks, and I’m hoping the side effects will be less severe and my body will handle the medication better.
I has worked really well for me. I hope you have the same experience and better. As I mentioned in the video, the ramp up on Kesimpta was a little rough but it definitely got a lot better over time. Good luck and please keep me updated if you make the switch.
I’ve been considering switching to Kesimpta too for similar reasons, but I’ve been doing well on Ocrevus for 2 years. After the first year I didn’t notice much of a crap gap, but I definitely feel when I’m due for another infusion. I’m holding out hope for the upcoming BTK inhibitors to be as effective without suppressing the immune system.
Thanks for the feedback. Yes, the BTK stuff looks super interesting. I've been listening to @realtalkms, Jon is great at staying on top of it. Weird how the gap creeps up after a while. I didn't notice it at first either. Have a great day! Appreciate you!
Ty so very much for your video! I know what it was like having the “crap gap” when I was on tysabri which was an infusion once a month the third week was terrible for me! Btw it’s Heath from the Facebook post I put out today!
Hi Heath! Thanks for the feedback! I truly appreciate it. The Facebook group seems to be a good round up of folks!
Ive been on Ocrevus for 6 years and haven't experienced anything negative. I can see how just sitting there for 7 hours would be boring. My infusion time is about 4 hours. I usually spend this time meditating and working on the computer or reading a book or watching TV. All the infusion chairs have a built in TV at my facility.
Ohh The built in TV is nice!! The small room with beige walls is not exactly exciting. :) Thanks for sharing! Great to hear that you are doing will on Ocrevus!
Thanks for the video. I was always curious about the different experiences of Kesimpta vs Ocrevus. I've been on Ocrevus for 7 years with no problem. Actually, my MS symptoms reduced over the years and no new lesions or relapses. No crap gap. No side effects except from the steroids they give before infusion. I have to take a sleeping pill to sleep the night after each dose. Not taking the steroids would be a big plus.
As for the infusion, I started with the five hour infusion. But a few years ago, they introduced the fast infusion that only takes two hours. It's still two hours. I'm very lucky that my clinic is a 10 minute walk from home.
Oh, and there is now Ocrevus Zunovo. It's the same drug but as a subcutaneous injection that lasts 10 minutes. You still need a nurse to administer it. It's been aproved in Europe and the US.
Finally, just a little correction, Ocrevus and Kesimpta don't block the CD20 protein. They both basically attach to the CD20 protein that only exists on mature B lymphocytes and kills these lymphocytes. In other words, the CD20 is a way for the drug to only kill the B lymphocytes and no other cell.
The way they kill them is very slightly different, but the result is the same: you end up killing all the B lymphocytes.
Another difference between Ocrevus and Kesimpta is that Ocrevus is approved for progressive MS. Kesimpta is not. Not that it's not or less effective against progression. It's just that it was not tested on patients that have PPMS. So insurance companies might give you trouble if you try to get Kesimpta if you have PPMS or SPMS.
Anyhoo, thanks for the video and best of luck with your MS !!!
Thanks for the comment and feedback! It's great to hear that you aren't having issues with the crap gap! and no noticeable progression! That's awesome! Thank you again!
Im off kisempta bc of side effects next day after shot felt like a got hit by a bus and more upper respiratory infections. Asked nero and i both agreed i haven't any flares in over 10yrs. And im also 64. So im going off
Wow, that will be nice!! Thanks for sharing!
Thanks for the video. I’m on Ocrevus and it’s a pain in the ass to fight the insurance companies I’m sure you’re familiar. Ad that’s for anything we need. I like the fact that it’s only every 6 months and I’m also on the rapid infusion.
Thanks for the feedback. Yes, the once every six months was nice. I am happy to hear that you can handle the rapid infusion. That makes a big difference. Keep on' Keepin' on!
I’m on Kesimpta, so far so good. I haven’t tried Ocrevus
Happy to hear that it's working for you! Thanks for the comment!
Hi Cliff I have been on ocrevus for 2 years but the past 6 months like straight after last infusion I have been ill with everything other then Ms symptoms.. Hospitalised 3 times.. At 6 month mark my bloods just passed to get it done again… I have decided to not take anything until my bloods are back up and my horrible chest infection has cleared.. This is the worse I have felt.. My neuro wants to start me on Mavenclad so not to deplete my immune system.. I will wait another 2 months see where my mri scan and symptoms are.. I was due for my ocrevus dose Monday.. Thanks for the info on Kesimpta my anxiety went up listening to how hard it is to inject yourself and again immune depleting stuff it does.. I wasn’t leaving home and caught everything and I am ocd in cleanliness, diet and supplements.. It’s so hard I’m 52.. lesions in my brain only..
Sorry to hear about your situation. I have a friend that got a respiratory infection while on Tysabri. He has been battling the infection for 7 months. I think he's going to take a drug holiday to see if he can clear the lung scum. Believe me when I say that the self injection gets much easier every time you do it. Keep me posted. Thanks for the comment!
I will update after 2 months see where I’m at.. Thanks for replying and the information you provide
Im about to start Kesimpta! Im an athlete so I would like to avoid the crap gap. Thanks for the info...and remember Kamala 2024 😊
@@partofyoursquirrel sounds like a good plan. The crap gap killed my cycling when I was on Ocrevus. Happy weekend!
@@partofyoursquirrel the big issue with Kesimpta is being immune suppressed. Longer recovery from viruses and infection coupled with catching them more often, may make being an active athlete difficult.
@@Believe-you-me- I feel like it's better to take my chances with that rather than a 2 month crap gap with Ocrevus
I don't know if you've heard about and/or considered Mavenclad, but if you're an insurance will cover it I don't remember the exact statistics but it was either 40% of people get 70% better or 70% of people get 40% better. Either way pretty impressive.
I have MS too, but unfortunately my insurance doesn't cover that and I don't qualify for any type of help with that specific drug unfortunately or else I'd be switching myself. I do notice that the doctors heavily suggest infusions though although I have been on oral treatment only for the entire 10 years since I've been diagnosed. I can't necessarily say that his work is well as I would have liked it to, but not everything works for everyone the same way I guess and I myself don't have it in me to get an infusion or give myself a shot so it was basically oral or nothing at all. Best of luck to you.
Thank you for the comment! I did discuss Mavenclad with my doctor when I ditched Ocrevus and before Kesimpta was approved and released. I certainly haven't ruled it out. It would be nice to be done with this DMT stuff. I find myself yet again playing phone tag between my dr., the phramacy, and the insurance to get my next dose of Kesimpta. It never seems to be easy although I would THINK it's routine for everyone else involved in the process. Have a great weekend and Thank you again!
I'm going to start delaying the time between each ocr infusion and monitor with labs. With the thought that I'll hopefully be taking in less drug over the course of my life
Interesting idea. I wonder how the ramp ups and downs will feel. Keep us posted!
Ocrevus... stopped as head sweating even at -40C.
Kesimpta.... 3 week start... cold/flu symptoms so bad and nothing stopped them ..the mucus was unreal! just so draining... never made it to monthly doses.
Ouch!! Did you switch to anything new? I did my injection yesterday and it wiped me out until this morning.
@NeuroNerdyX not yet, still recovering.
@@lolwu7718 Sorry to hear that. I hope your Sunday treats you well.
Very well explained thanks for sharing my wife us in ocuervus infusions and it’s all true how you expressed your situation for her as well but she tried a similar injectors she hated it but I’m thinking if some cell therapy thanks
@@SassyLeeHillius thanks for the comment. Is she progressive? Or RLRM?
I’m on Kesimpta 1year and it’s definitely not working for me. I feel a severe progression, problems walking and using my hands. I’m switching to ocrelizumab hoping it will be better
Thank you for sharing! Good luck with your journey and I am saddened to read that it's not working. I guess we should be thankful that we live in a time of options. Have a great Sunday and thank you again!
I already do a monthly injection for migraines. I doubt that Kesimpta would be a problem that way. What I’d be concerned about is the immune suppression factor. Does the drug keep you in a permanent state of immune suppression? If it does, do you get sick with colds and other viruses more easily?
Hi, I'm not a doctor, so I'm only speaking from my personal experience and please don't use it as sound advice. In my experience, the Kesimpta hasn't been an issue with other infections. In fact, my family gets sick a lot while I do not.. I have a child in elementary and he brings home all kinds of stuff. I wash my hands a LOT and take a multivitamin. They usually get the flu and covid, while I don't. So who knows ( they were vax'd for both and so was I ).. I do have a friend who has been sick for like 6 months with a cough. They took him off his DMT until it clears up. Again, just my experience. Valid concern though!
@@NeuroNerdyX Thanks for responding. I appreciate the information.
@@SandiTink You bet! Have a great day!
The 6 mth gap is what worries me, I’m now concerned about kesimpta as I’ve been sick most of the 3yes, not MS related,& I’ve lost over @25kgs& can’t put weight back on ,I’m only @40kg& very little subcutaneous fat anywhere to inject into, I’ve had MS over 26yrs& I’ve done every sub cut drugs& never had problems because I was 25+ kgs heavier, thanks for your useful advice \ information, good luck
If it helps, I'm 6'3" and about 175 lbs, so not a lot of flab to grab and jab, but if I sit down, I can usually find enough around my mid section. It doesn't take much. The needle is very small. I'll make a video of how I do it and post it soon. It has made things a lot easier. Thanks for the comment! Have a great weekend!
I'm more curious about how long do we stay on either one of these drugs??
I have heard until your immune system weakens enough for MS to no longer be an issue. Age 60+.. which for me means (if drug prices don't change), I'll be into it $2,160,000. Eeeks!
As a man with MS since 1996, I took a lot of mediciations, but now, since 2013, I'm on something called Coimbra Protocol, a treatment with high doses of vitamin D, created by a brazilian doctor. I strongly recomend you read about it.
Thanks for the information. It's always worth looking at. I am happy to hear that it is working for you!!
Vitamin D toxicity anyone 🤦♀️
@@Believe-you-me- you better read a little bit more dude, 11 years on vitamin d, no damage whatsoever, you just have to follow simple rules
@@Believe-you-me- I have heard that that is a thing.
@@abikeesclerosada “avoid taking more than 4000iu a day”
Hey Cliff, what type of ms do you have? I’ve had 5 infusions of Ocrevus and the side effects during the infusions are still ruff. Takes me over 8 hrs to finish. I’ve been thinking of switching to Kesimpta. Dr thinks I might have PPMS but says it should work if I wanted to switch. My major hesitation is so far the Ocrevus seems to be working. Worried about switching and having worsening.
Hi Jeff, I have RRMS, however, according to my neuro, all MS is progressive and those particular dx classifications like RRMS and PPMS are mostly for insurance purposes. That's what I was told, BUT, I'm not a Dr. or Clinician so who knows.. I had the same issue with the infusions, they took FOREVER. If they cranked up the flow rate, I'd get instantly nauseous. I am very happy that I switched, especially when it comes to those insanely long infusion times and feeling like garbage for the next few days after. The Kesimpta did take some time to adjust to. The ramp up was rough, but now, Its not bad. I hope this feedback helps. Keep us updated! Have a great weekend! and thanks for the comment!!
Hi 😊 I started Kesimpta on Tuesday and ,I had the normal flu side effects,it's ok.
But now I feel my heart often, a bit like I was an old man who had to pay attention to my heart all of a sudden... So I'd like to know if this is normal for the first injections and e'de much this rested but that it will pass or I will become tragile? I like to drink coffee and do sport (before Kesimpta I had no worries about that?).
So I'm a bit scared :) I'd like your patient opinion 😊
Hi, I had that experience too! especially when I was laying down. Coffee definitely made it worse. I have had the heart thing as recently as earlier this month. It comes and goes. I hope this helps. One patient to another. Thanks for the comment!
@@NeuroNerdyX I'd love to know if it was more during your first injections; then I guess and hope it calms down?
I don't see it as a side effect anywhere in writing so I'm glad to see someone who has also had the same thing; it must play on the heart.
I hope it will go down because I only had my first injection on Tuesday, the second on Tuesday. You know the procedure for the first month, I'm not going to tell you.
Hopefully, the problems with the heart will be minor and will disappear and not occur as a bad habit.
Take care my brother
@@nicolaslefebvre1803 hi, it definitely seems to have calmed down, it only happens for a few days after the injection. I'll take note of it this time, I'm due to inject in a few days. I will certainly keep you updated to date! Thanks for sharing!
@@NeuroNerdyX I look forward to hearing from you :)
I hope it goes well for you (and for me too lol ).
Let's talk in a while :) tomorrow will be my second, my only worry is my heart, it's how can we say... Important?
Entoucas it's been 6 days since my first Kesimpta and I can say that I have to be "careful" with my heart (I don't have any heart problems) and that I've been sleeping pretty badly since then.
Is everything connected or do I need to rest a bit more this month? I don't know, we'll see ^^ see you soon and be well buddy 😋
@@NeuroNerdyX Hi, my second injection went well for the symptoms, I often feel my heart even 7 days later. I wonder if it's related to the Kesimpta or if it's a cause of the stress that the new treatment has generated 🤔
Clearly I think Kesimpta has something to do with it and I read about a guy who had to stop after a year (for serious heart problems) but this side effect very few people seem to talk about.
So now I'm showering at my leisure and getting ready to do the 3rd Kesimpta. That's my news :p
And how are you, my friend? What's new ? 😊
I had my first two ocervus infusion and it was only 3 hours twice
That's nice!!! Sounds like they cranked it up for you.
That's because the first ocrevus treatment is split in two doses ( two weeks apart) so the body adapts to the drug, but on the next one which is 6 months apart you'll get the full dose which will be around 6 hrs..
Copaxone isn't as easy because it has to be taken at least once every 2 days
@@timlittle1286 as an injection?
@@NeuroNerdyX yes in the thighs,hips or stomach or anywhere there is loose skin
I'm on Ocrevus for 4 years now Doc says its the best...Thanks for yr info and remember Trump2024
Great to hear it is working for you. Full speed ahead!
Shame you haven’t realized Trump is an Idiot yet. You have to wake up. 😳
Are you serious? - OR Trump for jail asap!
@@Jennifyr-wo5cv Dead Serious!!We need Bullet Dodging Trump out there who would do a way better job helping find the cure for MS👍
@@VerbalOnLifekeep dreaming Trump ain’t gonna do anything but help the rich