Diagnosed in 2014 at age 51 I am a male. Started on Tecfidera for 2 years. switched to Aubagio because of constant stomach and bowel issues. Became wheelchair dependent in November of 2018, continued to have progression and switched to Ocrevus and started. 2016 brought prostate cancer and had a prostatectomy. I now check PSA level every 6 months and so far PSA remains low but detectable. My EDSS score is an 8.5. Through 2020 I tried The Combria protocol taking 80 K of vitamin D per and had no improvement in my MS. being strictly on the vitamin D I lost 50% function of my left hand. Now investigating HSCT. Thanks Dr. Beaber you and Dr. Boster give great information. I remain positive and work every day to walk again.
I wasn’t in a trial but personally, I started on Rebif, moved to Ocrevus at my own urging. Saw significant progression and went back to Rebif after one year. Stable now, but no longer walking.
So happy to hear your review of ocrevus. Thank you for your time and dedication to MS. A side effect I experience with infusions is an increase in my heart rate. After about 1 hour of infusion my heart rate increases from 70s to 100s. I did not tolerate the 2 hour infusion. I do 3 hour infusions now , but never had reactions with the longer infusion times. Infusion day and usually the next day I remain in the 100s even at rest. Then each day starts to return to baseline gradually over the course of about 3-4 days. Annoying but tolerable. Still hope everyday for a Remyelination therapy that’ll fix the damage. Especially the Cspine lesions
Not sure if anyone cares but if you are stoned like me atm then you can stream all the latest movies and series on InstaFlixxer. I've been watching with my gf recently :)
I refer to myself as an, Ocrevus fail. I was beyond hopeful. I thought, if this can stabilize me, or slow it, I was excited for my infusions. I could walk well enough, in comparison to now, basically, I was a functional creature. Now, I'm relegated to a wheelchair. I know I'm not the only one who got worse on it, to the point that I asked my MS Specialist to stop it, which I did. Had to get another MRI to see if I had more damage. Specialist told me unless I showed more damage my insurance would tell me to continue the Ocrevus. Fails exist, and I feel like no one pays attention to them. Feel like all that's happened is: I'm worse and in more medical debt then I care to talk about. I'm not saying it doesn't work, but I am saying it doesn't work for some of us
Not entirely sure whether 'secondary progressive' is a classification used in the US, but it's a life changing diagnosis - from treatable to not - in the UK. So I'm very keen to know why, when Ocrevus has shown itself useful in RRMS and PPMS, it's not considered as a treatment for SPMS. It's very good news there's an effective DMT for PPMS, but from a lay POV it's a bit hard to fathom why it would not also be useful for secondary progression...
Great video. I’m in year 2.5 of ocrevus and seem to be doing well. This video shed some light on the longer term use of this medication for me. I also am curious on the rate of cancer in this group compared to the general population. I don’t not seem to far off but I have not done any research. Thanks for the information and looking forward to the next video.
Thanks. I would leave it to epidemiologists to comment on the rate of cancer in this cohort compared to the general population. I'm sure we will learn more about this going forward.
@@DrBrandonBeaber I agree it is their field of study and they could better answer that question. I do feel that the risk is worth the reward. Hope things are getting better for you on your side of the country. I’m in Florida and it seems to be getting a little better!!!!
Great video. Im currently on plegridy at the moment and it feels like its not doing anything for me and I am slowly but surely getting worse as I dont feel like i can walk as far as I used to and on my most recent MRI I have a new small lesion and an enlargement of an old lesion. My neurologist has suggested that I can either switch to tecfidera or ocrevus as I am not happy with the beta-interferons. It's really overwhelming having to make such decisions for yourself but this video has definitely cleared up a few questions. Thanks 👍
Got my First Infusion of Ocrevus in Sept. of 2017 and have been on it ever since, it's been 6.5 yrs for me in Nov. Now, I do believe that if I were to stop Ocrevus that would be a good chance that I would progress faster. My nero had me on 1gram of Solumedrol every month before I asked to be taken off of it, because after I would receive it I started to make my stomach upset and I would feel very tired and would need to take a nap afterwards.
I was diagnosed July 2019 and started on Ocrevus Aug. 1, 2019. I had infusion reactions during the 1st two 1/2 doses although fewer the second 1/2 dose. I had no reactions during the 1st full dose. I had infusion reactions during my second full dose. Additionally, I had an itchy throat the next day. Bad enough that I called the infusion center. They told me to take Benadryl a called back a few hours later to see how I was doing. The Benadryl did the trick. But, I was exhausted for a week after the infusion, "napping" for a couple of hours a day. That didn't happen after the 1st full dose and just makes me wonder if every infusion is a unique experience, just like the MS.
It's most common to get infusion reactions with the very first infusion because a lot of the reaction is caused by the b-cell depletion itself (the cells are lysed and their contents spill out in the blood, inducing inflammation). With subsequent infusions, the b-cell counts are typically low (often at undetectable levels), so the reaction is less likely. However, some people develop an allergy to the drug itself.
@@DrBrandonBeaber next infusion is scheduled for December 16. I’ll let you know how it goes. I had allergy testing 2 years ago and was allergic to nothing. It would really be something if Ocrevus turns out to be the one thing I’m allergic to. 🙄
Hi! Thought I would share my last infusion experience. I had one infusion reaction, maybe about 1/3 of the way through the bag. I had trouble swallowing and the back of my throat/roof of my mouth was itching. The nurse stopped the O and gave me Benadryl in the IV. After about 1/2 hour we started up again and all was fine. At home, at about 1am, I had a hard time swallowing and some itchiness in my throat. I took one Benadryl which after a 1/2 hour didn't seem to do anything. So, hubby took me to the ER and I had more IV Benadryl and solu-medrol. Honestly, though, by the time the ER staff got to the point where we were prepping to inject the medicine, I had mostly recovered from the sensations I was having. Which tracks with the last few times I had the reaction at home in the middle of the night - I just gutted it out and the sensation eventually passed. I called the infusion center the next day, the nurse talked to the doctor, and the doctor and I will likely have a discussion about continuing with O or maybe switching to Rituxan. I'm curious to understand this trouble swallowing sensation. I haven't felt like it interferes with breathing, so is it a benign symptom? I'll be asking the doctor when we speak again.
Where do you get those results? For instance 23% reduction in T25FWT? After reading the study I remarked at the 6.5 years point the difference was not significant. Thanks in advance :)
How does it slow disease progression? I know clinically the patient’s metrics level out and sometimes improve what what do they think this drug does in the body that would improve symptoms of brain and spinal chord injury. Is that poorly understood and just happened by happenstance? Seems like something must have tipped them in thwarting progression in particular...is this knowable at this time?
Hi everybody, I've been on Copaxone for 17 years, currently diagnosed with SPMS and thus of this drug. My doctors want to give me Ocrevus, but I'm reluctant. When I hear from the vid that 27% of people went into th trial with active leasions the outcome is no wonder. ) Ocrevus seems to prevent from new leasions. Now I haven't had active leasions for 15 years. If they want to put me on O prophylacticly so to prevent new leasions, well Copaxone was doing the job. Still my EDSS is deterorating. But to me that seems to be a problem of degeneration. Right now, I could explode due to the pressure that I have to make my mind up. I don't know what to do.
Certainly one has to consider how closely they match the participants of clinical trials. We don't have great data on older people with progressive MS. The FENTREPID trial is encouraging in that we will get more meaningful data.
Thank you very much for your answer.I will talk to my neurologist about the Fentrepid. But things always need some time till they make the way to Europe, it will probably need some time till this medication is available in Germany, thank you very much. When I watch your videos I feel like being taken seriously and I gain knowledge.@@DrBrandonBeaber
Been on ocravus sunce march 2022 next infusion js march 7. Left breast pain as of 2weeks on and off also workouy lift and cardio at planet fitness every other day
My husband has PPMS and Ocervus for a few years. He reports no side effects from the treatment. He has still progressed. Ocervus is only funded for RRMS, not PPMS in Australia. Hopefully results like this will see the medication getting put on the PBS.
@@DrBrandonBeaber no funded treatments for PPMS, they just approved Mayzent for SPMS which means it will cost pts about $6.50 per script. My husband's neurologist/MS team sourced funding through a program with the drug company for Ocrevus, he commenced treatment dec 2017. Thankfully we pay nothing at the moment. The Dr, Nurse and hospital treatments are free with our Medicare system.
@@tabirthabrownfield8889 My personal opinion is that SPMS and PPMS are the same disease, so it doesn't make sense for a health care system to approve a drug for one condition over the other.
@@DrBrandonBeaber I might say that to his neurologist next time we see her, joking. I dont know much about Mayzent? I do find it interesting how different each health system around the world is. Thank you for your videos, we are learning lots and always have lots of questions for his MS team
12 years ago at the age of 45, I was diagnosed with PPMS. Then I could still walk without any assstance tool. 3 years ago I started with Ocrevus. At that time I already needed a rollator inside the house, and a weelchair outside. Since I have the Ocrevus I still became worse. Does it make sense to continue with the Ocrevus in your opininion?
So what can explain the so called crap gap that so many ocrevus users complain about ...including myself. I’m a month away from my infusion and just like 6 months ago I’m having symptoms worsening and reminded of symptoms I have forgotten. So more specifically how would killing B cells make symptoms less intense and as they come back slowly cause worsening of symptoms? Would you expect a patient to have no B cells at say 5 months?
It is very common for people have completely undetectable b-cells after receiving drugs such as ocrevus, often for a period much longer than 6 months (though this varies from person to person). Many people report the "crap gap," but it is not necessarily associated with repletion of b-cells, and the cause it not completely understood in my opinion.
Diagnosed in 2014 at age 51 I am a male. Started on Tecfidera for 2 years. switched to Aubagio because of constant stomach and bowel issues. Became wheelchair dependent in November of 2018, continued to have progression and switched to Ocrevus and started. 2016 brought prostate cancer and had a prostatectomy. I now check PSA level every 6 months and so far PSA remains low but detectable. My EDSS score is an 8.5. Through 2020 I tried The Combria protocol taking 80 K of vitamin D per and had no improvement in my MS. being strictly on the vitamin D I lost 50% function of my left hand. Now investigating HSCT. Thanks Dr. Beaber you and Dr. Boster give great information. I remain positive and work every day to walk again.
I wasn’t in a trial but personally, I started on Rebif, moved to Ocrevus at my own urging. Saw significant progression and went back to Rebif after one year. Stable now, but no longer walking.
So happy to hear your review of ocrevus. Thank you for your time and dedication to MS. A side effect I experience with infusions is an increase in my heart rate. After about 1 hour of infusion my heart rate increases from 70s to 100s. I did not tolerate the 2 hour infusion. I do 3 hour infusions now , but never had reactions with the longer infusion times. Infusion day and usually the next day I remain in the 100s even at rest. Then each day starts to return to baseline gradually over the course of about 3-4 days. Annoying but tolerable. Still hope everyday for a Remyelination therapy that’ll fix the damage. Especially the Cspine lesions
Not sure if anyone cares but if you are stoned like me atm then you can stream all the latest movies and series on InstaFlixxer. I've been watching with my gf recently :)
@Finnegan Joshua yea, I have been watching on instaflixxer for months myself =)
I refer to myself as an, Ocrevus fail. I was beyond hopeful. I thought, if this can stabilize me, or slow it, I was excited for my infusions. I could walk well enough, in comparison to now, basically, I was a functional creature. Now, I'm relegated to a wheelchair. I know I'm not the only one who got worse on it, to the point that I asked my MS Specialist to stop it, which I did. Had to get another MRI to see if I had more damage. Specialist told me unless I showed more damage my insurance would tell me to continue the Ocrevus. Fails exist, and I feel like no one pays attention to them. Feel like all that's happened is: I'm worse and in more medical debt then I care to talk about. I'm not saying it doesn't work, but I am saying it doesn't work for some of us
it's big business, selling hope.
Not entirely sure whether 'secondary progressive' is a classification used in the US, but it's a life changing diagnosis - from treatable to not - in the UK. So I'm very keen to know why, when Ocrevus has shown itself useful in RRMS and PPMS, it's not considered as a treatment for SPMS. It's very good news there's an effective DMT for PPMS, but from a lay POV it's a bit hard to fathom why it would not also be useful for secondary progression...
Great video. I’m in year 2.5 of ocrevus and seem to be doing well. This video shed some light on the longer term use of this medication for me. I also am curious on the rate of cancer in this group compared to the general population. I don’t not seem to far off but I have not done any research. Thanks for the information and looking forward to the next video.
Thanks. I would leave it to epidemiologists to comment on the rate of cancer in this cohort compared to the general population. I'm sure we will learn more about this going forward.
@@DrBrandonBeaber I agree it is their field of study and they could better answer that question. I do feel that the risk is worth the reward. Hope things are getting better for you on your side of the country. I’m in Florida and it seems to be getting a little better!!!!
@doc can you do the 10 year follow-up of tecfedira? I'm on that and would love to know your thoughts
Great video. Im currently on plegridy at the moment and it feels like its not doing anything for me and I am slowly but surely getting worse as I dont feel like i can walk as far as I used to and on my most recent MRI I have a new small lesion and an enlargement of an old lesion. My neurologist has suggested that I can either switch to tecfidera or ocrevus as I am not happy with the beta-interferons. It's really overwhelming having to make such decisions for yourself but this video has definitely cleared up a few questions. Thanks 👍
I'm glad it was helpful Jamie :)
Got my First Infusion of Ocrevus in Sept. of 2017 and have been on it ever since, it's been 6.5 yrs for me in Nov. Now, I do believe that if I were to stop Ocrevus that would be a good chance that I would progress faster. My nero had me on 1gram of Solumedrol every month before I asked to be taken off of it, because after I would receive it I started to make my stomach upset and I would feel very tired and would need to take a nap afterwards.
I was diagnosed July 2019 and started on Ocrevus Aug. 1, 2019. I had infusion reactions during the 1st two 1/2 doses although fewer the second 1/2 dose. I had no reactions during the 1st full dose. I had infusion reactions during my second full dose. Additionally, I had an itchy throat the next day. Bad enough that I called the infusion center. They told me to take Benadryl a called back a few hours later to see how I was doing. The Benadryl did the trick. But, I was exhausted for a week after the infusion, "napping" for a couple of hours a day. That didn't happen after the 1st full dose and just makes me wonder if every infusion is a unique experience, just like the MS.
It's most common to get infusion reactions with the very first infusion because a lot of the reaction is caused by the b-cell depletion itself (the cells are lysed and their contents spill out in the blood, inducing inflammation). With subsequent infusions, the b-cell counts are typically low (often at undetectable levels), so the reaction is less likely. However, some people develop an allergy to the drug itself.
@@DrBrandonBeaber next infusion is scheduled for December 16. I’ll let you know how it goes. I had allergy testing 2 years ago and was allergic to nothing. It would really be something if Ocrevus turns out to be the one thing I’m allergic to. 🙄
Hi! Thought I would share my last infusion experience. I had one infusion reaction, maybe about 1/3 of the way through the bag. I had trouble swallowing and the back of my throat/roof of my mouth was itching. The nurse stopped the O and gave me Benadryl in the IV. After about 1/2 hour we started up again and all was fine. At home, at about 1am, I had a hard time swallowing and some itchiness in my throat. I took one Benadryl which after a 1/2 hour didn't seem to do anything. So, hubby took me to the ER and I had more IV Benadryl and solu-medrol. Honestly, though, by the time the ER staff got to the point where we were prepping to inject the medicine, I had mostly recovered from the sensations I was having. Which tracks with the last few times I had the reaction at home in the middle of the night - I just gutted it out and the sensation eventually passed. I called the infusion center the next day, the nurse talked to the doctor, and the doctor and I will likely have a discussion about continuing with O or maybe switching to Rituxan. I'm curious to understand this trouble swallowing sensation. I haven't felt like it interferes with breathing, so is it a benign symptom? I'll be asking the doctor when we speak again.
Where do you get those results? For instance 23% reduction in T25FWT? After reading the study I remarked at the 6.5 years point the difference was not significant. Thanks in advance :)
How does it slow disease progression? I know clinically the patient’s metrics level out and sometimes improve what what do they think this drug does in the body that would improve symptoms of brain and spinal chord injury. Is that poorly understood and just happened by happenstance? Seems like something must have tipped them in thwarting progression in particular...is this knowable at this time?
Presumably, it reduces the progression that is associated with inflammation in MS which is in turn mediated by aberrant b-lymphocytes.
@@DrBrandonBeaber this type of inflammation doesn’t lead to myelin damage but makes your CNS feel like it has a cold all the time?
Hi everybody, I've been on Copaxone for 17 years, currently diagnosed with SPMS and thus of this drug. My doctors want to give me Ocrevus, but I'm reluctant. When I hear from the vid that 27% of people went into th trial with active leasions the outcome is no wonder. ) Ocrevus seems to prevent from new leasions. Now I haven't had active leasions for 15 years. If they want to put me on O prophylacticly so to prevent new leasions, well Copaxone was doing the job. Still my EDSS is deterorating. But to me that seems to be a problem of degeneration. Right now, I could explode due to the pressure that I have to make my mind up. I don't know what to do.
Certainly one has to consider how closely they match the participants of clinical trials. We don't have great data on older people with progressive MS. The FENTREPID trial is encouraging in that we will get more meaningful data.
Thank you very much for your answer.I will talk to my neurologist about the Fentrepid. But things always need some time till they make the way to Europe, it will probably need some time till this medication is available in Germany, thank you very much. When I watch your videos I feel like being taken seriously and I gain knowledge.@@DrBrandonBeaber
Been on ocravus sunce march 2022 next infusion js march 7. Left breast pain as of 2weeks on and off also workouy lift and cardio at planet fitness every other day
My husband has PPMS and Ocervus for a few years. He reports no side effects from the treatment. He has still progressed. Ocervus is only funded for RRMS, not PPMS in Australia. Hopefully results like this will see the medication getting put on the PBS.
I didn't know that about Australia. Are there any funded treatments for PPMS there? Did your husband have any problems getting the medication?
@@DrBrandonBeaber no funded treatments for PPMS, they just approved Mayzent for SPMS which means it will cost pts about $6.50 per script.
My husband's neurologist/MS team sourced funding through a program with the drug company for Ocrevus, he commenced treatment dec 2017. Thankfully we pay nothing at the moment.
The Dr, Nurse and hospital treatments are free with our Medicare system.
@@tabirthabrownfield8889 My personal opinion is that SPMS and PPMS are the same disease, so it doesn't make sense for a health care system to approve a drug for one condition over the other.
@@DrBrandonBeaber I might say that to his neurologist next time we see her, joking.
I dont know much about Mayzent?
I do find it interesting how different each health system around the world is.
Thank you for your videos, we are learning lots and always have lots of questions for his MS team
12 years ago at the age of 45, I was diagnosed with PPMS. Then I could still walk without any assstance tool. 3 years ago I started with Ocrevus. At that time I already needed a rollator inside the house, and a weelchair outside. Since I have the Ocrevus I still became worse. Does it make sense to continue with the Ocrevus in your opininion?
Sorry. I cannot give you personalized medical advice here.
So what can explain the so called crap gap that so many ocrevus users complain about ...including myself. I’m a month away from my infusion and just like 6 months ago I’m having symptoms worsening and reminded of symptoms I have forgotten.
So more specifically how would killing B cells make symptoms less intense and as they come back slowly cause worsening of symptoms? Would you expect a patient to have no B cells at say 5 months?
It is very common for people have completely undetectable b-cells after receiving drugs such as ocrevus, often for a period much longer than 6 months (though this varies from person to person). Many people report the "crap gap," but it is not necessarily associated with repletion of b-cells, and the cause it not completely understood in my opinion.
What about RRMS?
Dr. B If I move too much my lower back goes out I have to walk hunted over or I get painful spasams
is this related to my MS ? or just a bad back
@dr brAndon can you explain mavenclad ?
Thanks for the suggestion. I'll do a video on this at some point.