Unveiling Ocrevus: My Journey With This MS Treatment
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- Опубліковано 18 лис 2023
- Upon popular request, I share with you my experience with MS disease modifying treatment Ocrevus. I have mixed feelings about It, so listen to me talk about them here!
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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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It's true that you also cannot know what your life would be like if you had not undergone this treatment so I agree with your position on focusing on the positive things while science may perhaps surprise the world with new discoveries in the near future. Let's bet on the glass half full and not on the one half empty.
Seb, you are a like a lighthouse that remains lit, guiding the hope of so many.
A huge thank you that goes beyond its meaning.
Peace.
I love that image, Liliana, thank you dearly! And let’s indeed hold onto that glass half full 🤗😞
Dear Seb, I’ve been on Ocrevus for two years now and like you have found it trouble free. I even caught Covid once and got over it reasonably quickly just last year. However, I do feel my MS symptoms are slowly increasing. I do not have tremors, but my walking and balance is slowly getting worse. Also, I have a strange symptom of itchiness that gets worse in hot weather or when I am sitting quietly. Brain fog is a new symptom that I have had just this year and my thinking processes are just slower than they used to be. Perhaps due to my age (near 60) I am on a faster trajectory to progressive MS. I don’t know. But I keep positive, keep active, keep exercising, keep doing all I can to just be me. Thanks Lord for my loving family all around me. God bless you Seb, with love Sharon from Sydney.
Hi. New here and I'm very glad that I found your channel. I am starting yoga again because of you, now as an MS patient. Thanks for the encouragement!
This is my first time to comment, I believe; I thought I would share my experience with Ocrevus. My MRIs remained stable and I enjoyed the long intervals of six months between infusions. However, I experienced a worsening of some symptoms. The catalyst for worsening of most was probably a combination of things, but there is one in particular that was the reason for my Neurologist's decision for changing to a different medicine, and that is digestion... issues with my colon, particularly. Keep in my mind that my family and I have a long history of IBS, bouts of colitis, Crohn's, etc. BUT, according to my Neurologist, Ocrevus can contribute to a worsening of those chronic illnesses, or even cause them. And it certainly did in my case. I have been on a new infusion for six months and those issues have all but disappeared, thank God. I miss the long time intervals between the administration but I do not miss those terrible issues that I dealt with and that had me hardly functioning at times.
My suggestion to anyone reading this who might suffer from the same is to talk to your Neurologist and Gastroenterologist about Ocrevus's possible role in exacerbating your symptoms. They are the ones who would best know if Ocrevus might be affecting you in this way. My two doctors worked together to come up with a new plan and I couldn't be more grateful for both of them.
Stay strong, my fellow MSers! ❤
Sorry can I ask if I may what your new infusion was. Thanks
You're doing amazingly well!
Thanks buddy 🤗🧡
Hey buddy I'm sorry to hear about you having tremors still. Have you looked into baclofen? I was having severe spasms / tremors at the beginning of my diagnosis. Baclofen is a wonder drug for me? It made the tremors and the spasms go away. Thank God for that❤
I've also been on Ocrevus almost 2 years now. I was JCV positive after taking TYSABRI for 3 years.
I really haven't noticed anything while being on Ocrevus. I'm due for a dose next month. So hopefully I start to see a change. But I haven't seen anything negative with this medicine so far. I have however noticed a little bit of a crap gap as of last month. I think my body knows that I'm running out of gas of my ocrevus.
So here we go MS warriors keep fighting. All my brothers and sisters. I hope we get a cure in our lifetime ♥️🙏🏼🙏🏼🙏🏼🫶🏼🫶🏼👍🏼💪🏼💪🏼
What a lovely encouragement to start the day with 🤗 thank you brother!! 🙏🏻🧡
@@LifeofSebMS You are very welcome. Thanks for sharing your journey with your fellow MS warriors 💪🏼🫶🏼🙌🏻🙌🏻🍻🍻🤜🏼🤛🏼🤝🏻🇺🇲🇺🇲🇺🇲🇺🇲🇺🇲🇺🇲🇺🇲
are you taking both ocrevus and baclofen at the same time?
thanks for sharing your experience. it’s great to hear from someone whose also on the same drug.
🙏🏻🧡
It is hard to tell whether my pain is a symptom or side effect, but either way I am grateful for the advancements in technology, research, and treatments, and I am enjoying becoming more aware of ways to manage my health and stress to overall limit the effects of this disease.
Yes!! 🙏🏻🧡
Sorry to say, I don’t enjoy going around “preaching” others but… advancements in technology? Sorry, no. Its all a lie. MS is mercury contamination + extreme inflammation, and they know it. See how easy it is to reverse it by detoxing mercury and stoping all inflammatory foods. Of course they know this, but they would not make profit of it, plus they dont want to heal you, they want to experiment with you and of course keep you chronically ill.
Good luck.
Sorry to say, I don’t enjoy going around “preaching” others but… advancements in technology? Sorry, no. Its all a lie. MS is mercury contamination + extreme inflammation, and they know it. See how easy it is to reverse it by detoxing mercury and stoping all inflammatory foods. Of course they know this, but they would not make profit of it, plus they dont want to heal you, they want to experiment with you and of course keep you chronically ill.
Wow !!!
Thank you for making this video!
🙏🏻🧡
Hi- Always watch your videos- and they are always wonderful, heartfelt and helpful ;-) We have similarities but also differences...for one I am a woman, 58 yrs old, EDSS of a 5 and been on Ocrevus for 4 years. My MRIs have been stable but my EDSS keeps nudging upwards. This seems pretty common with the Ocrevus crowd. No relapses and MRI holds steady but there is PIRA. I am at the right age and stable so have decided to look into Aubagio for next year. It isn't as good against attacks but I am SPMS so less likely to have them and it is better at protecting against brain volume loss. So that is what I am looking into-
Regarding how often you need an Ocrevus Infusion is every 5-6 months based on Mfg recommendations. Do not allow your CD19 counts to start to climb before having your next infusion, Dr Boster says that is too late. You can hear that at 12 1/2 minutes in this video Dr Boster states this...hundreds of good videos here that I refer to constantly
ua-cam.com/video/gvCNUeIO_aA/v-deo.html
Good luck and Thanks!
Wow thanks for sharing, that is so interesting! I’ll check it out 🤗🧡
Thank you so much Seb 💚💙 also let me how is it along side with the whale’s protocol goin on any review on the dr terry wahls diet ?!? Plz make a video on that as well. Lot of love 💕 Dubai 🇦🇪
Will do! Love from Spain 🇪🇸🧡
Fucking MS..I have had this from my 17 which started in 2005..Having been through so many symptoms and treatments..For the time being I'm also in Ocrevus..I wish you the best
So sorry you’ve had to deal with this monster since that young age 😔🧡
@@LifeofSebMSOnly we are the ones who can really understand the other. Stay strong mate
You too man 💪🏻🧡
Hi Seb. I must say I'm one of those where Ocrevous isn't working for me if anything I'm getting a lot worse I cant walk far at all so have a mobility scooter at 33 years old. I catch everything now infection after infection cold ect. Since having the infections they have rapidly made MS worse. So MS has now effected the right side of my body. Before the infections my left side of body was effected.
So things are not good. I've spoken to my neurology nurse and she has also contacted the neurologist which I did and have an appointment to see him and hes organising an urgent MRI scan and hopefully will put me on a different medication. I have no life at all now. Keeping going is getting harder and harder. Kind regards Jade.
Hi seb. I started ocrevous this year I haven't noticed a difference. I'm still as I was if not worse. I think I've gotten secondary ms now to be honest .
It seems that it’s quite common for people to get that SPMS feeling on Ocrevus 🤷🏼🧡
Am on tecfidera now for over 2 years due to see my nauraligst in January. Had another MRI 2 week ago just feel my condition getting worse roll on January.
😕🧡
I am in France now and I will start to take Ocrevus next month 😊
💪🏻🧡
I think this is the 6th video I have seen about Ocrevus. I was supposed to start Ocrevus about a month ago. Besides in my personal case there may be another disease that could be mimicking my MS symptoms, I have not seen one video about Ocrevus where a patient has said, "yeah, Ocrevus has really made a difference and improved my symptoms". I told my doctor, "Yeah, I think I need a second opinion first". Since my symptoms have not noticeably worsened in about a year to year and a half, I'm thinking I made the right decision in delaying my infusion indefinitely.
Did you ever checked again your b.burgdoferi antibodies?
My ocrevus journey was not so good. I was on it for 3yrs too long. I stayed on because I was hopeful, but I decreased over time. My pain, walking, tremors and spasticity got worse. The min I got off some symptoms subsided. This was my experience. It wasn’t for me. Know the difference between B and T cell therapies.
Thanks for your input! That’s super interesting 🤔🧡
@@LifeofSebMS Ocrevus is constituted a B Cell Therapy , it acts a little differently than traditional T cell therapies … good luck. Please keep us posted. Thanks for the video 😁
Hi seb did u ever consider hsct. If i asked you that previously I apolgise. Also are you on wahls thought I heard you were. One month on wahls was doing the bone broths and veg and liver and the red meat killing me constipation as I just tried one steak and do fasting for day and a half. Besides my symptoms are zinging. Just started on kesi pta and my poor husband had terrible cancer scare which one was cyst only in liver thank God. The thyroid has been inconclusive so waiting for ent doctor. So no wonder I am in the pits You are so calming. I hope to spend the summer in spain. We have work colleagues and friends there and just love the people. We are in rainy ireland where there lots of ms. Fathers to daughters mothers to sons siblings with it. I moved to UK to get fresh genes but his parents are from similar ms breeding hellholes. My poor children.
My son has had twice treatment with Ocrevus so far, before that he was on Tysabri feeling "quite fine", but they changed due to high transaminasis... Well, last time he had Ocrevus was almost 11 days ago, and he is still feeling miserable and full with pain whereas after a Tysabri treatment he felt quite well after max a week. Next week he'll have his neurologist visit, and we'll see...
I hope it all goes well 🙏🏻🧡
Tell Me and your problems with your hands after ocrevus ? It's better ?
Unfortunately not… 😕🧡
❤
Why you stop using CBD oil ?
I haven’t! 🙏🏻🧡
Thank you so much for sharing your journey!! For me it’s been one year since I’m on ocrevus and I feel exactly the same things! Wait and see is the only thing we can do 💪🏽🫶🏼
Hoping for the best 🙏🏻🧡
* little sad noises in avonex for 8 years *
Oh no! And is it keeping you stable? That is ultimately the most important thing 😐🧡
@@LifeofSebMS no new lesions in MRIs so far, that's the main reason my Dr hasn't switched me yet. She says, she doesn't want to smoke our best shots, before the big fight. But sometimes I feel like I can't keep up with this anymore 😪
@AlejandroFerrariMc is it still giving you bad side effects?
@@LifeofSebMS yes, sadly. I feel the same way, as the first day I started it, so no weekends for me. Well, can't complain that much, I guess, since I've been, relatively lucky so far!
Nice glasses, what's the model?
Hahaha that is so off topic 😆🧡