Bună ziua ,mă numesc Mihaela și sunt din România, am MS de 8 ani și sunt pe Aubagio...nu sunt decât mulțumită în ultima perioadă am foarte multe spasme musculare dureroase,în care mana și piciorul dar mai ales mana mi se strânge și o pot deschide totul pentru câteva minute(asta ma sperie rau)😢
My first dose Friday 13th 😬🤞🏻 the unknown is the worst part but that's life with MS. Appreciate all your time and posts you do. Thank you all the way from Scotland 🏴
Hey! I had my first dose a week ago, Charring Cross Hospital in London. My second dose is this week Thursday. It went much better then expected. I only had a small reaction during the infusion, and after 30 minutes break, I continued the infusion. It took around 5 hrs the entire time at the hospital. Unfortunately, today I feel like sh!t. My fatigue it’s extremely high and I feel quite weak and a bit dizzy. But that’s me. I’m actually feeling good about the infusion this coming week. All the best ❤
I have my 6th dose this Friday. It's unnerving the first time getting it, but it's not so bad. Maybe a little reaction, but they clear that up quick. Then it's easy peasy from there on out. Just your body freaking out about this new thing entering your body.
I've been on Ocrevus for 2 years....I haven't had a single problem.....the nurse I get is very good....never a problem....and she's fun to converse with when she's not busy...I had anxiety going into it ...but rest assured...there's really nothing to worry about.
I must be that rare patient, it takes 7-8 hours, including the initial 2 hours of the prep and delays. I am there all day, Every time I experience the same thing. About 1 to 2 hours in I develop a pinch in the back of my mouth/throat, and a mild to moderate itch in my escutcheon tubes. The nurse stops the infusion, then adds more Benadryl and then once the pinch/itch resolves, the infusion is resumed without any further delay or recurrence. My next infusion will be my sixth. My Igg is fine, my Igm is low. Im 64 yr old male, EDSS 6.0
I am so grateful for you ❤ I wish more Drs would have these conversations with us!! I am blessed to have an amazing GP and I have used your videos to help me learn more about this disease.
Dx in 2019,with optic neuritis which resolved well. Started Rituxan 3 months after dx. I have had no symptoms of MS (except maybe fatigue, but its hard to tell if that MS related, or being a woman in her 40s with hormones related). I pushed my infusions to 10-11 months. My Bcells generally are around 10-15 by that time, but no crap gap. And my IGG levels have always stayed around 725-750. Would really like to take no medication since im symptom free, but scared to go off completely as the risk seems to high.
I’m sensitive to Steroids. It makes my heart rate go way up. I’ve never been offered Ocrevus without the steroids. I’ve often wondered if this was possible. Your clinic sounds like it is doing things a step ahead of my clinic. I wish my neurologist would watch your videos.
I have had horrible reactions with the steriod they just do not listen i am p*ssed they told me they would not give it to me but the nurse said was in the RX and he had to do it and last one was done 5-10 24 did not sleep for 10 days and and still wired since i am angry all over the place i am and have been told not the same person i railed at the neuorologist for not following the directions and i am still upset
I am on this infusion medication and I just had my six month visit and I go for my every six months infusion in January I really don’t see a whole lot of a difference I mean I’m still walking not good to say the least but I do have a cane and a Rollator walker I had my wheelchair delivered to me a couple weeks ago and that really made me cry knowing that at the age of 44 I am with this disease and I don’t know how long I’ve been having multiple sclerosis is very scary and I feel like my world is shut down
Thank you so much for all you do! My own Neurologist keeps things under a bushel & I have to drag things out of him! Your openness is refreshing!❤🧙🏻♀️Happy Halloween!😂
I’m getting my next dose in November. I can’t tolerate a rapid delivery. So my infusion takes all day, not just five hours. I experience bad Crap Gap. I’m in it right now. My neuro is going to try a few days of Solu-medrol soon to see if it helps me through it. I have steroid-induced diabetes. Every time I need S-M, my blood glucose reaction gets worse, but I’d rather deal with that than not being able to walk. I recently got an endocrinologist to help me with it. I hope we can mitigate some of the blood glucose spike. I need a five-day infusion of S-M for an exacerbation annually. By giving me three days of it to help me through the CG (a perfect term for it, by the way), we may be able to prevent the annual “attack” and keep me from having at least two crappy months a year plus an exacerbation. I hope it helps. Otherwise, Ocrevus has been a great drug for me. There have been no new lesions since I started taking it eight years ago.
Nmosd here. Crap gap for me starts between the end of month 3. It sucks SO bad. I self inject corticotropin acthar gel 2x a week and that helps a lot through my whole treatment but I need more help and they aren't doing anything about it here. I get very little time to feel good and then suffer for months until I can get my next dose. Solumedrol works but it absolutely kills me!
Dr. Boster, you are an outstanding person. I see the passion in your videos for what you present in all videos. I am so happy that I subscribed because you have helped me enormously. Thank you from the bottom of my heart!!! I have learned so much, and I feel prepared for battle now. I am a me expert and my own advocate. Too bad you don't have an office in Arizona. 😢 God bless you and yours.
Had my first infusion on Wednesday. No side effects at all and it has already improved my quality of life more than I could have imagined. I am so lucky to have a amazing neurologist that let's me control and make decisions on my treatment, rather than dictating to me. We are so lucky to live in Australia
I really appreciate this content and love your delivery. So clear yet upbeat and super informative. MS is incredibly hard to navigate- both internally and externally. This has been very grounding. Thank you.
This is the most informative video I ever watched on crap gap and infection. I always get sick and I feel like crap a month and a half before my next infusion
I would LOVE to have infusion every 4 months...or something to help with 💩 gap. That is something I suffer from. My infusion is on the 25th of October. I wish you were in my state. You are SO informative!!
Thank you so very much for covering this topic in such depth. Now, if I can only get my neurologist to listen, it would be a miracle. He removed me from Ocrevus because of my age and his concern for "POSSIBLE" future infections. I am now regressing at a much rapid rate and really want to return to previous dosing with Ocrevus. I don't guess you can consult from Ohio to California 😅
Timing is everything!!! Just coming off a severe covid infection with pneumonia, and how/if I continue Ocrevus is up for discussion. THANK YOU for thinking outside of the box, but more importantly, for SHARING those opinions. They are great conversation starters moving forward for many people. Ocrevus has been a great DMT for me since 2018. I’d hate to just stop it without thinking. (I did need treatment with IVIG to recover from covid). Thanks again, Dr. Boster!
By far the best video about Ocrevus. I have been on it since early 2018 with infusion #12 coming up tomorrow 10/10. A question - for those that have dosing problems, have they considered spacing one dose(600mg) out over a year???
Do you feel okay the days after your treatment. Im the same slow dose so Im there for 6 hours (with the watch to make sure im okay) but i get very fatigued worse than I already am and my skin hurts every time. Then when that goes away after a couple days im fine.
This is a great video! The ideas are brilliant- I wish that insurance companies and regulators listened to doctors more because YOU are the ones with the lnowledge and practice!
Yeah, it's like I posted ..I'd LOVE to get my Ocrevus 3x a year....but with what my infusions cost....I'm sure my MMAI (Medicare/Medicaid ) says....ah, 2 is plenty
Ive been on Ocrevus for about 3- 4 years now. In the beginning. Genetech used to call to ask if I had received the dose on time and how I was doing. I remember asking about feeling more fatigue in the few weeks leading up to the next infusion. They seem to think, at the time, that it should only be maybe one or 2 weeks only . It was nice to have learned it now not only has a name, but that I wasn't the only one! It has improved with time. Thankfully.
I make videos on this channel to help educate, energize and empower PwMS. I talk about a lot of different meds on this channel. Fortunately, there are several excellent high efficacy drugs to treat this condition.
I fought for O here in the UK! I’ve been on it for around 5 years now and feel very stable as do my MRIs 🙌 Thank you for such fab explanations and making me feel, hell yes I did the right thing to fight for it 💪🏻💪🏻💪🏻🥰💪🏻💪🏻
@@hazelem1266 being honest with you still the same not new relapses since that date! But my main problem is the balance when it comes to walking! The day that I reach that advance my living it would be normal just hope to get it
I am Appreciating all your content! Watched many of your videos and find your channel so helpful! You are helping many people with your educational efforts! THANK YOU!!!
Good morning Dr Boster- I had been on Ocrevus for 6 infusions. My experience wasn’t good. Anyway the differences in how administrating the medication you spoke of could have been the game changer for remaining on Ocrevus. Thanks for sharing your experiences.
Thank you for your help. When i see my new neurologist i now have more info to make the right decision. I trust your advice and thankful for your help.
Such valuable information! I’ve experienced significant fatigue & pain in the month before my 4th dose & wondered if it was because of this “crap gap” .. My neurologist mentioned symptoms can start after the dose but not before your next one 🙄. I feel more informed to have another conversation about it whenever my next appointment may be THANK YOU. I’m due my next one in March so fingers crossed I get through the next few months without anything rearing its ugly head. 😂🙏🏼
Thanks for this update, I've been wondering if there had been any different methodology about administration, gap crap aides, and timing. Good info! Thanks, Dr.B!
Glad he covered pregnancy at the end! I actually ended up starting Ocrevus, my third DMT, when my youngest was 2 months old. My MS hadn't been well controlled prior to that, so I kept on breastfeeding while on Ocrevus vs. waiting to start Ocrevus until I was done breastfeeding. He weaned at 19 months. Ocrevus ended up being a borderline wonder drug for me - not only did MS relapses and new lesions stop in their tracks, but my fatigue also improved considerably and so did my fatigue-dependant symptoms like weak legs, tingling, etc. My son showed zero negative effects from nursing while on Ocrevus and is a healthy and energetic 3.5 year old now.
Nope I do the whole enchilada every time. And trust me. I wanna get out of there asap. It lasts all day and it's soooo boring, I just looks at it all day, as my nap day.
Dr Boster, have you seen some Dx'd with (FM) Fibromyalgia ever find out it was indeed MS after years pass and more symptoms develop? FM seems to be a catch-all Dx. Thank you for the content and explaining things so well.
I was diagnosed with Fibromyalgia earlier this year after 43 years of wrong diagnoses. I was Dx with MS in 2011. Nobody yet has been able to tie the two together
Hello Dr. Boster. I had my first infusion of O two weeks ago. Mine was through IV. So far so good. I didn’t respond well on Rituxin. I’ll have my 2nd half dose this week Wednesday. I was at the infusion center for 6 hours. Dr. B, can you kindly please or do you have a video pertaining to foods to eat after the infusion? I love to juice and eat lots of fruits and vegetables. But I was told after the infusion, I should refrain from juicing. I’m not sure why. Thought it would be beneficial. Can you please cover this. Much Gratitude 🙏🏼
Thanks for the info! Have you had any experiences with O triggering an IBD flare in a patient with comorbidity? My neuro is sending me to a MS specialist for a 2nd opinion. He's worried about my 2nd (full) infusion triggering a colitis flare again, and the risk of bowel perforation. I don't want to stop O! 🤦♀️
I'm on Kesimpta and I've definitely had an uptick in my bowel issues, but it's also a lot easier to tell how/what my body is responding to, whereas previously I was just so inflamed all the time from everything. Learned I was lactose intolerant just this past summer.
Can we please all agree that 1 month is not the same thing as 4 weeks? The two are only equivalent 3 out of every 48 times. I know this sounds like a nitpick, but my next Briumvi infusion was scheduled at the wrong time because of this false equivalency, and I'm sure I'm not the only person this has happened to. I'd really hate to think there are a bunch of people out there dealing with crap gap because their doctors don't know the difference between 6 months and 24 weeks.
Have you had many patients be hypersensitive to Ocrevus? I switched from Tysabri last year, here (Aus) our protocol is 100mg of hydrocortisone + paracetamol + an antihistamine and titrate through the infusion (same i/2 dose 2weeks 1/2 dose). My initial half dose I got to my 3rd titration and it triggered an asthma attack, hives etc. Stopped, waited 30mins, 100mg of methylprednisolone, 30mins, finished the infusion ok. 2 week dose, no reactions at all. First full dose (B-cell count was 16 cells/uL on pre-labs), same pre-meds, same titration asthma again, but this time my throat swelled as well as the hives. Same treatment with the methyl-pred and got through it. Ended up switching to Kesimpta with no issue so far (almost on 4th dose now). I'm diabetic so my neuro didn't want to have to keep giving me the steroids each time.
I had some allergic reaction symptoms my first dose of Ocrevus, extra meds and slower infusion and I did fine! Covid happened and I never got more. This year went to get Ocrevus infusion, they didn’t listen to me about need a slower infusion, kept have reactions, so not I am listed as allergic to Ocrevus and they want me to start Kesimpta.
As a patient that (I think) suffers from "crap gap"... consistently feel bad a few weeks prior to my infusion...... .I'd love to be able to get my Ocrevus 3x a year.... considering I'm on Medicare and Medicaid (MMAI) ....I don't think they'd like an "extra" 100,000$ treatment getting added. Unless by doing 3 instead of 2....the price was lower.
I've taken three doses of ocrevus and I haven't seen anything from it. I tested positive for the JC virus and I could no longer take my tysabri. I honestly felt better taking that than ocrevus. I was on tysabri for 3 years. Here's hoping the new meds will work😮😮
I've been on O for a year and have had throat itching every time except the 2nd half dose. Why is this? No new symptoms or lesions thus far so it seems to be working but the infusion itching is a little frustrating as it makes the day even longer.
Thank you Dr B for all what you said. I am due to Ocrevus in June 24. I am currently on Tysabri but because if my JC V level I have been advised to change medication. I have currently chosen O cercus as it seems aas effective as Tysabri which has been good for me. Would you suggest this would generally be a good replacement for Tysabri?
Ive been diagnosed with MS 5 months ago, I'm on Gelenya .5 and my head is fried, keep going on the net looking for information on this medication and is it one of the best drugs for MS 😢 oh an thanks again Aaron for all the videos you put up, great information and the only person im glued to about MS, thanks again.
That’s weird my neurologist had me get the shingles shot right when I was diagnosed with MS before I started Ocervus. I have been on Ocervus since July of 2020 and it’s working perfectly for me. You should be able to get your flu shot now. I would definitely recommend spreading the shots out from each other. Be well
I've been doing ocrevus for 3 years. I'm on the extreme slow method. I'm still having to do split doses and each dose is 8 hours long. Everytime we go above 40 drips per hour I get a reaction with my throat. Wish I could do 2.5 hours.
Questions: 1. Do you find patients who have been taking O longer have more aggressive problems with crap gap? Mine seems to be getting worse each time. (I’m in my 7th year on it) 2) why isn’t JC testing required with O like Tysabri? I noticed the O commercials state it can put you at higher risk for PML so why not require test levels? I was switched off Ty after becoming JC+ and just wonder if my JC numbers could go up overtime?
I have been on Ocrevus since 2020. I do have to do the slower dosing as I do not handle the infusion to well but well enough to keep going. However I just found out I have multiple new lesions on my spine with symptoms so I am doing a steriod infusion now which I hate. I want to keep going with ocrevus for the easiness but im worried. Im 48 and was diagnosed 9 years ago. Also the days after my treatment kick my butt. Anyone else feel that way? I take some days off work to recover
Dr Boster,thank you for your information. DX in 2005- I live outside of Houston. I start Ocrevus- in a few months- a few questions- Does this repair memory, and can you drive after taking the infusion? Or do you recommend someone to drive the patient home afterward? I take Kesempta now. Does the infusion
My neurologists PA doesn’t believe in crap gap. She thinks I’m nuts. Also I am on my third relapse after my Ocraveus infusion the PA again didn’t believe me said this one was a pseudo relapse. Until I called for the third time because I couldn’t take it and everybody at chair yoga noticed it. I called and she wasn’t there but my neurologist was and he ordered 3 days of steroid infusion and a week of oral steroids. Like I said this is the fourth time she’s brushed me off, so hopefully my neurologist has another PA, so I don’t have to find another one.
I do not take the pre-meds. Got it the first two half doses and first full dose. None after that. I hate the way Benadryl makes me feel and I think steroids are not needed for me based on side effects. No issues here.
Thank you for this video! My husband has been on it since 2019 when he was diagnosed with aggressive progressive MS with major damage to his brain and spinal cord already. As he puts it it looks like firecrackers went off in there. He gets it every 6 months for 5-6 hrs. He gets the premeds except for the steroid. He had a little hives on the 1st half dose but nothing since which might be why he gets the long infusion method and he never got the steroid far as we remember. After this information we are going to talk to his neurologist at his next appt to make sure this is the best method time-wise and if the steroid would help especially since he's found the steroid gives him more abilities back when he's on it.
Thank you for the tips! This is super helpful. I’ve had 4 infusions so far (5 if you include the first 1 as 2!). Am I the minority, because I’ve felt terrible since starting Ocrevus. Can DMT’s just not suit you? I’ve progressed very rapidly in the last 2 years (since starting O). EDSS went up from 1 to 4.5. ☹️ Any advice would be greatly appreciated. 🙏🏼🧡
I'm NEVER going to get pregnant because I have a VERY VERY RARE MS TMS. My Nero says I can get a very bad relapse that could make me die. And I also don't want to give the baby a VERY VERY rare medical problems like when I was a baby if the baby survived.
I’m just curious what is a very very rare tms? I know a friend that has MS and got pregnant and all her symptoms of MS went way while she was pregnant.
Is Ocrevus safe for someone who has had multiple instances of severe ischemic colitis in the past? I need to switch from the Copaxone I've been taking for the last 15 years, but the side effects of the new drugs are scary and it's hard to know which ones I should be considering.
Well the steroids has enlarged the size of my breast and I look soo ugly because I am thin with big breat. I am very upset and when I work out I cannot jump. I feel so sad, please Dr. Boster can I stop the STEROIDS?? And if I stop the steroid, does Ocrevus infusion by itself will be beneficial??? Please Give me an answer and thank you for your help.
I started Ocrevus 2 years ago. I’ve always had the long dose. I didn’t know there was a slow dose. I get crap gap about 2 weeks before. I always have fatigue. 24/7 year round. Should I be talking to my doctor about this?
Doctor, in my case I used to receive rituximab, but I got another illness (plus covid) and now I am supposed to receive gylenia. Soon after that period, I will receive ocrelizumab. Any opinion?
Please help me! I was diagnosed with MS a few months ago. I’ve had several relapses since then. The doctors prescribed Kesimpta. 6 weeks ago I had my first injection of Kesimpta and had very bad side effects for almost 3 weeks, especially the first 10 days were crazy !!! They stopped it and want me to start Zeposia ASAP but I heard many bad things about it! I don't know what to do! Dealing with backache, numbness, headaches, dizziness, and loss of balance more often now 😣 (I'm 40 years old mom with 2 kids) #zeposia #kesimpta #MS
