Wow I’m late to the party… had no idea they came out with this and I’ve been on Ocrevus for 4 years! It’s exciting news to me. I’ll have to research availability in the U.S.
Interesting, thank you for sharing. I hope this helps people have an easier treatment process. For me, since my diagnosis about 3 years ago, I first took a treatment that was at home injections, I did that for like a couple of weeks and didn't like it, I then decided to go about it drug-free. I try to live a healthy life style, working out, no sugar and no processed foods, and it's going well so far. Best wishes for all, it's not an easy journey but we can do it! And thank you, Tom, for this channel, keep uploading!
That's great to hear that lifestyle changes is working for you! In my next video I talk about the lifestyle changes I have made as I am now relapse free for 3 years and have only been on treatment for a year and a half so I put most of it down to the lifestyle changes I have made! Keep it up! Kicking the sugar has got to be a massive factor?
Yeah so was I! I mean it is a new option but not an entirely new treatment I guess. Yeah Lucid MS really excites me with the capability to rebuild Myelin
Thanks for the update and you do look well! I was only diagnosed earlier this year and I am not on any treatment yet. Ocrevus was recommended for me but I declined as I did not like the side effect profile. This news will probably not have any direct impact on me until I decide to start treatment but it will perhaps lead to greater convenience for others. Tom, may I ask out of interest and for comparison with my own MS management, how many times a year do you have an appointment with a neurologist?
Ah right, what side effects worry you most about Ocrevus? I found it to have the least side effects compared to other treatments when I was comparing. In terms of appointments with my neuro, it's about once a year at best! Is that the same with you?
@@tomgarbett77 Yes, my neurology appointments will be once a year now too but I do have an appointment with the clinical nurse specialist in between. I thought once a year to see the neurologist seems like a long time. Regarding the Ocrevus, I read on Wikipedia of all places that the rate of cancer in people on Ocrevus is as much as 3 times higher than patients given a placebo. I worry about serious infections as well that I have heard of some Ocrevus patients getting. I did ask the neurologist specifically about PML which seems deadly and terrifying and he said he had only had one PML patient in his rather long career. Knowing my luck, if I was on Ocrevus I would probably be his second.
@@rosieposie9564 Yeah it is frustrating and really should be more regular appointments in my opinion. Also my neurologist always seems to be running behind when I have an appointment and tries to get me in and out as quickly as possible! Yeah I knew there was an increase in breast cancer from trials. And PML is much strongly associated with Tysabri than it is Ocrevus, so I think you would be fine in that case. But I do think the end goal with me is to not be any treatment because at the end of the day you are tampering with your own immune system which can't be good!
@@tomgarbett77 I am not supremely impressed with my MS neurologist either. Before my care was handed over to him, I was being seen by a general neurologist who was much more thorough and attentive. Not being on treatment is a gamble. I am just hoping my diet and lifestyle changes will be enough to keep me relapse free for a while at least. I hope that the trials of the BTK inhibiters will be successful as I think I might like them better than the drugs which are currently on the market. I think we all would rather not be on any immune system tampering treatment but I am glad the Ocrevus is keeping your MS stable.
@@tomgarbett77 I'm ok, but my fatigue and dizzy spell were better when on DMT. The consultant seems reluctant to give me anything which was the case when I was first diagnosed at the age of 50.
@@tomgarbett77 Its quite a lot to explain on here but its definitely worth looking into. I came across you when I was approved for Ocrevus out here in South Africa this year but haven't started it yet as came across this other protocol which i have now managed to do and so seeing how that goes first. If you send me your number or email i can explain more. "Solving the MS Mystery" by Hal Huggins or "Hidden Epidemic" by Thomas Levy are good places to start. This documentary also gives some nice back ground in simple terms: ua-cam.com/video/vGusDIvEHAo/v-deo.html Essentially it all relates to your oral health and the dental work one has had and then the process of undoing that in the right way. Resonated with me as i had metal fillings, root canals and cavities after previous wisdom extractions. By all means give me a shout though.
Thank you for the video I’m happy to hear that everything is stable 👍🏻♥️ My doctor said at end of the month I have to choose between ocrevus or kesimpta 💔🥹 I was going to choose kesimpta because I hate my doctor and the hospital that was a good reason for me 😂 but with this news it’s getting hard to choose between them + my doctor didn’t give any information I have to search but English is my second language so it hard to know everything especially medical terminology. If there’s any advice from anyone can help me ❤ stay strong 💪🏻
Wow I’m late to the party… had no idea they came out with this and I’ve been on Ocrevus for 4 years! It’s exciting news to me. I’ll have to research availability in the U.S.
Thanks for the update. Hope all is well.
No probs! Yeah I'm all good thanks, hope you are too?
Interesting, thank you for sharing.
I hope this helps people have an easier treatment process.
For me, since my diagnosis about 3 years ago, I first took a treatment that was at home injections, I did that for like a couple of weeks and didn't like it, I then decided to go about it drug-free.
I try to live a healthy life style, working out, no sugar and no processed foods, and it's going well so far.
Best wishes for all, it's not an easy journey but we can do it!
And thank you, Tom, for this channel, keep uploading!
That's great to hear that lifestyle changes is working for you! In my next video I talk about the lifestyle changes I have made as I am now relapse free for 3 years and have only been on treatment for a year and a half so I put most of it down to the lifestyle changes I have made! Keep it up! Kicking the sugar has got to be a massive factor?
I was expecting an actual new treatment. But this is cool.
I'm looking forward to Frexalimab, NVG-300, and Lucid MS.
Yeah so was I! I mean it is a new option but not an entirely new treatment I guess. Yeah Lucid MS really excites me with the capability to rebuild Myelin
Thanks for the update and you do look well! I was only diagnosed earlier this year and I am not on any treatment yet. Ocrevus was recommended for me but I declined as I did not like the side effect profile. This news will probably not have any direct impact on me until I decide to start treatment but it will perhaps lead to greater convenience for others. Tom, may I ask out of interest and for comparison with my own MS management, how many times a year do you have an appointment with a neurologist?
Ah right, what side effects worry you most about Ocrevus? I found it to have the least side effects compared to other treatments when I was comparing. In terms of appointments with my neuro, it's about once a year at best! Is that the same with you?
@@tomgarbett77 Yes, my neurology appointments will be once a year now too but I do have an appointment with the clinical nurse specialist in between. I thought once a year to see the neurologist seems like a long time.
Regarding the Ocrevus, I read on Wikipedia of all places that the rate of cancer in people on Ocrevus is as much as 3 times higher than patients given a placebo. I worry about serious infections as well that I have heard of some Ocrevus patients getting. I did ask the neurologist specifically about PML which seems deadly and terrifying and he said he had only had one PML patient in his rather long career. Knowing my luck, if I was on Ocrevus I would probably be his second.
@@rosieposie9564 Yeah it is frustrating and really should be more regular appointments in my opinion. Also my neurologist always seems to be running behind when I have an appointment and tries to get me in and out as quickly as possible!
Yeah I knew there was an increase in breast cancer from trials. And PML is much strongly associated with Tysabri than it is Ocrevus, so I think you would be fine in that case. But I do think the end goal with me is to not be any treatment because at the end of the day you are tampering with your own immune system which can't be good!
@@tomgarbett77 I am not supremely impressed with my MS neurologist either. Before my care was handed over to him, I was being seen by a general neurologist who was much more thorough and attentive.
Not being on treatment is a gamble. I am just hoping my diet and lifestyle changes will be enough to keep me relapse free for a while at least.
I hope that the trials of the BTK inhibiters will be successful as I think I might like them better than the drugs which are currently on the market. I think we all would rather not be on any immune system tampering treatment but I am glad the Ocrevus is keeping your MS stable.
This sounds fab.
Yeah I think it's positive! Are you on Ocrevus?
No, I used to be on copaxone, but I'm not on a DMT at present.
@@hilarykerr7383 Are you doing well without treatment then?
@@tomgarbett77 I'm ok, but my fatigue and dizzy spell were better when on DMT. The consultant seems reluctant to give me anything which was the case when I was first diagnosed at the age of 50.
Hi Tom, have you heard of/read Hal Huggins book and his research on MS?
No I haven't, interested to find out what his research does say.
@@tomgarbett77 Its quite a lot to explain on here but its definitely worth looking into. I came across you when I was approved for Ocrevus out here in South Africa this year but haven't started it yet as came across this other protocol which i have now managed to do and so seeing how that goes first. If you send me your number or email i can explain more. "Solving the MS Mystery" by Hal Huggins or "Hidden Epidemic" by Thomas Levy are good places to start. This documentary also gives some nice back ground in simple terms: ua-cam.com/video/vGusDIvEHAo/v-deo.html
Essentially it all relates to your oral health and the dental work one has had and then the process of undoing that in the right way. Resonated with me as i had metal fillings, root canals and cavities after previous wisdom extractions.
By all means give me a shout though.
The name, please
Of the treatment? It's an injectable version of Ocreluzimab (Ocrevus)
So is not new treatment just new form of the same drug.
Yeah it's a new treatment option as in completely different dosage and way of administering, but the overall drug and it's effects are the same.
Thank you for the video I’m happy to hear that everything is stable 👍🏻♥️
My doctor said at end of the month I have to choose between ocrevus or kesimpta 💔🥹
I was going to choose kesimpta because I hate my doctor and the hospital that was a good reason for me 😂 but with this news it’s getting hard to choose between them
+ my doctor didn’t give any information I have to search but English is my second language so it hard to know everything especially medical terminology.
If there’s any advice from anyone can help me ❤ stay strong 💪🏻