My first Ocrevus Infusion! New treatment for my Multiple Sclerosis.
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- Опубліковано 8 вер 2020
- Hey guys! I've now completed round 1 of 2 of my first infusion with Ocrevus. This will be the new treatment I will be following, so follow me for more updates on how this medication will change my life!
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What is Multiple Sclerosis ❓
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease, and manage symptoms.
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⚠️ DISCLAIMER:
My channel is in no way supposed to provide medical advice or guidance and I do not claim any medical knowledge of Multiple Sclerosis. I merely discuss MS-related topics from a patient's point of view. If you have a serious medical condition, please consult your medical practitioner immediately. By using this channel you do so at your own risk. "Life of Seb" UA-cam channel accepts no liability in part or in full for any damages or injury caused by the use of any content provided.
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I am about to have my 4th full dose on the 21st. Game changer!!! No new activity!!! I do mine here at home. The nurse comes right to me which is a BLESSING with covid issues around me. Keep at it Seb. You got this!!! Blessed Be
was there any side effect? I will take my first dose by next week
ua-cam.com/video/W0Pg7CLlLvI/v-deo.html
Please watch. It's about MS.
@@Mohammed.1990 It's very individual. How did it go for you?
@@susanharrisdemorales3446 went very well. no side effects. it is way better than pills
Thank YOU SO MUCH Seb - you are making a difference in my life! Newly diagnosed - so hard to educate myself and accept the diagnosis but your warmth and love that is so present in your videos educate me and make me feel it will be ok. May start ocrevus soon. If you can do it I can do it! THANK YOU ... to infinity and beyond ❣
It’s gonna be okay. Praying for you. Stay safe
I really appreciate videos like this! I start my first infusion next week and am nervous so this helps!
Hey there, so how did it go?
Hey seb, well done - stay positive
I wish you good luck with the flight Seb!!
thank you for telling your story!! i hope you are doing well with MS and staying safe!
Happy journey seb
Glad u got the first infusion! Please take good care of yourself on ur trip. Look forward to hearing from u 2 weeks! B safe.
Hope all goes well with this new treatment.
Best of luck with your trip.
Your reaction is 100% normal as is the fatigue. I had the same. Bit different process though between Canada and Spain
Hope your trip is going well and I pray protection around you for health. I’ve not yet set up a time to get the treatment because of fear too.
Way to go Sebastian 😉! Have a nice trip! Don't worry everything will be just fine.
Thanks bro!!
Thanks for all information feels better now
Good luck on your trip....safe travels...😇
Do not get stressed,that's the first and most important I think, take the measures that should and must be taken and enjoy your trip. Everything is going to be just fine! Take good care of yourself! Hasta luego!
Thanks for posting your experience! Going for my first dose on Monday...hoping it goes just as well. I'll be sure to bring snacks :)
Saludos tio...I hope everything goes well with the new treatment❤
Gracias!
on 16.10.21 my boyfriend was diagnosed with MS, horrible times but we fought together and after Lemtrada (Alemtuzumab) treatment and the Swank diet he's been, thank God, since 2017 stroke-free. I wish luck and all the best for you Seb. Stay strong and don't ever give up.
That is wonderful to hear! I’ve heard wonders about Lemtrada! Lots of courage to you both 🙏🏻
Thank you for sharing. I start my first set in January. I pray your trip is wonderful
🙏🏻🧡
Love you bro keep it up!
I feel the same way but that made me feel Better seeing your review thank u😊
Hey there Seb. Was diagnosed about a month ago with RRMS. It's been rough dealing with it, but I'm trying to stay strong. Glad i found your channel. Ocrevus is going to be my treatment as well. I'm hoping my first dose will go as smooth as yours. Be blessed my friend and take care. 🙏
Sorry to hear… stay strong, now and always! 💪🏻
Thank you for this video , I would love to hear more from you❤️
Thank you! I’ll make an update about my third infusion soon 🤩
I hope your travels are going well. I hope the fatigue you experienced was just the anxiety dissipating and you have a nice time with your family.
Thank you! I’m over the fatigue now, but I found myself sleeping a lot the first four days after the infusion... all the best 🙏🏻
We are like a family now, most people comment i already know them. I feel comfortable seeing your videos.
That is wonderful to hear Ghulam!
This is sort is of a late comment, I am 17 years old and had my first relapse at around august, Iv had the lumbar puncture etc and the numbness of the legs, and i had to use a stick sometimes, I start new treatment soon and I’m super nervous but this made me a whole lot calmer, hope you are doing well :)
Stay strong! 💪🏻🧡
I start my very first dose next week. Thank you for posting your story.
Hope it went well!
🧡🙏🏻
Thank you for the video because I am about to have my first thank you for the acknowledge
Just had my second round ❤️
Thanks for the info I go September 21st for my first infusion
Hope it went well! 🙏🏻🧡
Älskar dina videos. Heja dig! ❤💪
Tusind tak!! Kram til dig og velkommen 💖💪🏻
Hey Seb! Absolutely love your content and am extremely thankful for coming across your channel! I have been to see MS specialists and they recommend either Cladrabine or Ocrevus as treatment. Are you able to advise how you are finding Ocrevus? Have you ever tried Cladrabine?
Hope that you're well, take care
All the best for your trip, Seb. Take care and all the usual precautions for 'the thing that cannot be named' ... then enjoy. 🥳
I made it safely to my destination! Thanks 🙏🏻😊
@@LifeofSebMS Good stuff! As they say - you have MS but it doesn't have you! 😀
This is my first video of yours I've watched. My husband is 34 y/o with PPMS and a legal immigrant. He's had his first infusion. #2 will be next month, right before he turns 35. Best wishes to you!
Best wishes to you and your husband!
God bless YOU I've destroyed my own health while some are given horrible obstacles. May the energy slide to your favor.
😉
I’m due to have my first full dose in October after being delayed due to COVID concerns. The paracetamol is to help your body to not react I was told to take some an hour before turning up to my infusion too.
Please say me one thing if i take infusion .... is their any chances to get disability after that?? and how to deal with any infection after taking immunosuppressants drug??
Thanks for sharing!!!! I start my first treatment on Wednesday!!
Good luck! 🙏🏻🧡
@@LifeofSebMS thank you! first one down... second one this upcoming wednesday. so far nothing, but i assume it takes a bit. thanks again, hope you are well
Best wishes🙏
🙏🏻🧡
I’m getting mine this month! This was insightful.
How did yours go AB?
@@RodSwift It went really well. No medicine side effects for me and no more injections. Would recommend for sure! Life-changer.
@@abab9622 I have selected it too. Gilenya v Ocrevus v Kesimpta... And I happen to know two friends and one is on Ocrevus and had an infusion just last week. So it was good to talk to someone in person about their experiences too
Did mine yesterday toooo,scarryyyy!!!
Why is it scary ?
It's great to hear that you have started a new treatment and you are doing fine so far. Can you also talk about possible Covid-19 vaccines and MS? Cuz MS patients have different body reactions from certain vaccines.
I’m afraid I don’t know much about this as I am not a scientists... sorry 😕
Happy it went well and good luck on youre trip, if it wasnt this time we could have taken a cup of coffe in denmark. Lots of love from Sara,sweden 💕🙏
Tak! Hvor i Sverige bor du?
Life of Seb i södra Sverige 😊
Well youre a lot like me noticing all the details. I'd say just have faith and keep your mind from over stressing, over analyzing and over internalizing everything you;re going through. KEEP BUSY, interacting with people, asking questions, going into nature.
All the above, that heightens the nervous system! You want it to not be hyper. The medication can help but at the end of the day it is your mind that's out of whack thats causing these issues I find. I have multiple sclerosis and it's pretty serious right now. Thats what I've learned - you gotta keep you mind feeling less overwhelmed and REACH out in the moments for help so things dont build up for you!! WE HAVE TO WORK ON OUR WAY OF BEING DAILY. So journal too, use your reflective side to your advantage. Drugs are forcing your immune system to relax, but you can only do that in the long run. As frocing anything from one end or drugs that ar emeant to pin point areas to change so the immune system, etc doesnt have that reaction can't really help for long without side effects at least...reality is the cure is in ourselves and calming our minds. Look at why you may have a proneness to snowballing things in your life, and chronic pain, issues are symptoims...
We are hit with so much at times!!! it SUCKS. CaUSE IT ISN'T as easy as figuring things out. It's just a process we have to go rhough..diet, etc so many factors.
I'm the same Seb have finished my first two half doses. I think in the loop BG run it will be better for us both. Take care
aww thats such a CUUTE kitty car in ya avitar !! aww he or she is so cute!
@@katieb777 Thank you. She means the world to me 🥰😻
Good video bud got mine in a weeks time,thanks for sharing from Ben.
Hope it went well brother 🙏🏻🧡
Yeah mate, it went fine thanks ! At least it’s only once every six months ! And my Blood pressure was really good this time so was really stoked, I always go home and rest straight after,and the next day so my body can adjust,and always drink plenty of fluids but I think my Ocrevus is working well,I hope you’re doing well man, thanks for getting back to me,From Ben.
That’s good to hear Ben!! I just had an mri and will see how Ocrevus has helped… will keep you posted 🧡🙏🏻
Thanks for your video.
😉
Oh please keep us posted. My son (37) has had the first two ocrevus doses. Everything went Well. I think the parecetamol is preventative, because you can get flu type symptoms, as with Betaferon. Good luck!! It will be awsome. Don't forget to keep up fitness too!! By the way, Ocrevus knocks out B cells, but you still have T cells to combat the unmentionable! Try to get a vaccination, I think, 4 weeks after your second ocrevus dose but I guess your neurologist is the best advisor on that one. There are also brilliant UA-cam bloggers from the US who are neurologist MS specialists. They provide really useful and comprehensive information and advice - always reminding you to check all out with your own doc. of course. Take care, stay Safe. Thank you and Keep us posted.
Thank you for the info! Best to you and your son!
Glad to hear it went well...we told you to bring snacks :-0 it is à long day of sitting around not really able to concentrate deeply but not sleep either. I didn't sleep well for a couple of weeks so hopefully that doesn't plague you as you travel. Give yourself breaks :-) good job, I'm about to schedule my 4th infusion, been on it one year already
Haha you did, Laura, you did! I guess I learnt my lesson 😝 I’m not experiencing fatigue for now, but I do have a constant headache...
@@LifeofSebMS I don't think I had fatigue, I was honestly tired as the steroids don't let me sleep. Next time less sol medrol :-) and maybe some grapes, never have had the headache but have seen it mentioned on the ocrevus FB page, good luck on your travels, lay low when you need to
After nearly 12 yrs without any MS treatment, I'll be starting my first Ocrevus infusion at the end of this month. I was put on Rebif (once a day self injection 3x a week every other day) when i was first diagnosed in 2009, but i hated the side effects of it so i stopped taking it. I was going to start Tysabri monthly infusion a few years ago but never did. So I'm praying this infusion works and with minimum side effects.
How did it go?
good luck :D they make me go to sleep the whole time BUT I wake up for the toilet it used to be in a deferent section ...shared btw and that drove me nuts ...why so FAR away? but now with the ''mnbn'' last time I got my own room (with a toilet) I was truly happy for the first time .
What a nightmare! The toilet for me was luckily quite close...
Yeah. My doctor wants me to start Ocruvus. But I also have Latent TB which she wants to treat but I also have depression and apparently the latent TB may cause Suicidal thoughts but if I don't do it before ocruvus I might end up getting TB which is worse! Because ocruvus drops your immune system making it easy for my TB to surface which is like what?! Either I die from TB or suicide or whatever these crazy treatment can do to the human body so yeah. I think I'm going Holistic for a while.
My wife got here first partial infusion yesterday.
Hello Seb! I am glad you are doing well!!! I am about to start the treatment too, what have they told you about the effect of the drug on male fertility?
I’m getting mine on Tuesday 11/22
❤️🤗🙏🏼 GOD Bless you
Thank you so much Seb! this video makes me not fear the infusion ive been totally avoiding since it might not kill me afterall- so i will go ahead and hope it goes well-will the ms be tamed after this 15 yr ordeal-i hope so!
Made it thru giving myself Avonex injections at home 😝
So happy this video encouraged you to make the right decision! Hope all goes well 🙏🏻🧡
I have my first ocravus infusion soon.
💪🏻🧡
Hey Sebastian, to avoid nausea I get 10 ml of ZOFRAN
I will be having my 1st dosage of Ocreavus coming up REAL SOON. I've had or should I say MS ( relapsing remitting multiple sclerosis) has had me since 2016..
Hope it works wonders on you too! 🙏🏻🧡
I also get Ocrevus!!!!
I will have to keep in mind and ask the nurse to slow down my process, because I feel like my tonsils swell up. It tends to feel like a bad sore throat, so I ask for a cough drop to help soothe the feeling. I will receive my 3rd Ocrevus Infusion in February 2021.
I hope that will help! Best wishes 🙏🏻
@@LifeofSebMS Thank you
Ive had neuropathy from my knees to my toes in both legs for 5+yrs and the very very first day i had my first ocrevus infusion 9/2019 wow the neuropathy was GONE my legs were CLEAR and normal !
Wow. That is such good news. I hope you are still doing Well.
@@susanharrisdemorales3446 thankyou ma'am i noticed im doing ok slighly well now *sigh* i had to stay in hospital a week 10 months ago :( ( fast heartbeat)
Bring a year later are you still taking this medication? I’ve heard people having horrible reactions with it. Deciding what medication I’m going to go with and Ocrevus was one of the options
Hey Seb, I;m glad the first infusion went well for you, I have a question about how you transitioned from Gilenya to Ocrevus as it is something my MS Team may be looking at doing for my treatment plan soon. Di you have to have a period of being taken off Gilenya before you could start the new treatment with Oc? And if you did, did you notice any increase in MS stmptoms from coming off Gilenya?
Hope you trip to Denmark is enjoyable, stay safe :)
Hey there! Well the transition was surprisingly quick, only one week without meds, but who am I to question their decision. They did all sorts of preliminary tests before so I guess they had enough information to decide that.
And no, the medication stays in your body for long enough for you not to experience any worsening
Enjoy your stay with your family. Your looking good. Be safe 🙏🏼
Why you stoped taking gylenia ? I’m starting it today ?
Hi Seb! Nice to see your video. I am Ehtesham from Pakistan. I am gonna my first dose of ocrevus in couple of weeks. Can you share what type of multiple sclerosis you have. I have been diagnosed in my spinal cord. Have best wishes for your health.
Hi ehtasham can u tell me that what is the cost of ocrevus treatment in pakistan?
@@zanjabeelyousaf9051 Hi! Here in Pakistan, first of all no specialist available for MS treatment. I travelled alot in my country to find any expert but unfortunately couldn't find. After spending 5 years in to diagnoses they finally ask me for ocrevus. Here in Pakistan 600mg dose is almost 6,700/- US $ . ( doze available in 300mg . I have infused first doze 300mg on August 05,2021. Here is my WhatsApp number . You can in contact here if possible. 923325247526
Hey I have rrms but quite dormant since I’m in treatment
Kanka durumun hakkında ve ocrevus hakkında bilgi verirmisin
Hi, does this treatment work for patients with secondary progressive MS with non active lessons.
It does! 🧡
I go for my first infusion on 11/4 I’m soo scared
I would love to switch to Ocrevus, I'm so tired of Avonex... :(
Avonex was the worst for me 😢 hope you can switch soon!
@Wonfoli Musical I know right? I also take my shots on Fridays, the Dr said the flu like symptoms would get better, but no change, I still feel as bad, as my first time.
Diagnosed officially about 1.5 months ago now. About 4.5 months since my first serious relapse - optic neuritis that has left me blind in one eye and hasn't recovered. :( I have just started Tecfidera - lots of flushing now... Was wondering what you have taken in the past in terms of medicine? Would actually love to use Ocrevus but in the Netherlands where I live they don't give it to you unless you have progressed... seems a bit backwards - waiting till you get worse to only prevent it later? Hope you are doing well Seb! :)
I hear great things about tecfidera despite the flushing… I have taken Tysabri, Gilenya and now Ocrevus. The latter is definitely my favourite 🥳 it really is weird that they wait for it to get worse before giving the better drugs, but it seems to be changing many places 🧡🙏🏻
@@LifeofSebMS Glad you are able to take Ocrevus :) Hopefully it will help slow things down for you as much as possible. I also find it strange! First chance I get though I will also be swapping to Ocrevus - let's hope the future brings even more effective drugs and perhaps even a cure for this horrible disease. All the best Seb :)
You too 😘🧡
I m so
I will get ocrevus tomorrow.
🧡🙏🏻
How time to get good results
this is the one he gets every 6 months!!
It’s great 😌
Your not on gilenya anymore??? What happened
I got a relapse while on it! So obviously wasn’t working that well anymore…
Take 4, 1000 mg of vit C x 4 times a day!
And vit d- one a day.
Hi can u pls tell me what brand? Thanks
I never understand the push to add vitamin c supplements . This is an auto immune diesels so why would you up your immune system so that it can possibly attack itself? My Neuro said don’t take more than your normal vitamin c intake . Your basically feeding the beast
Was the first thing injected to prevent infections?
No they give me steroids & antihistamines in the IV before the Ocrevus itself... Help to prevent reactions
Why did you stop gelinya? Best of luck !
It stopped working...
Thanks for reply i highly appreciate
Did you drive yourself to your infusion? If so, how was the drive home?
I walked :) and both were fine
@@LifeofSebMS Thanks for the reply. I think I might be switching to ocrevus soon.
may i ask why did you change to ocrevus from tysabri??? just curious sorry im on tysabri
I’m Jc positive 😉
oh no sorry to hear ... i am due for my next jc very soon ....my fingers are crossed for a negative result every time . stay safe & as well as you can be and enjoy your family time💕
@@LifeofSebMS so you were given tysabri even thought you were JC positive or did they find that out after? I am new diagnosed and after bloodwork and my heart condition issue Along with jc positive I was only given two options.Tysabri was taken of the list right away. I’m going with ocrevus. Thank you for your videos
I am so jealous of you westerners and all the options you have. This treatment is not available to me here where I live, and would love to try it :/
Where do you live?
@@KianaG1280 Bosnia and Herzegovina.
Benedryl
Can you drive afterwards
I don’t drive! You may be a bit tired but otherwise you’re fine
I don’t drive 🤷🏼