Hi I am Katrine, I was diagnosed about 6 months ago. My symptoms so far are optic neuritis twice and fatigue. I will be part of a trial starting next week with Ocrevus. Anyone have any experience with this medication?
Also still trying to understand what this illness means. I have been a very physically healthy active person most of my life. Not sure what to think about the future, it’s so unpredictable…
I would like to connect to anyone who wants to share their story about diagnosis , treatment and living with this disease.
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Katrine24
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Hi welcome to the group, I'm not familiar with Ocrevus but other members will have some experience with it. This is a great group to learn and/or give advice. 😀
I'm one of the oddballs who dropped Ocrevus because I was having too many issues with the infusion and aftereffects, but I still think it's about the best drug out there right now and worth a try. A lot of people have had good luck with it.
Quitting it was a no-brainer for me, because I've had MS for so long that it was a longshot anyway. I've done just fine without any meds over the years, but I do wonder where I'd be today if they'd been invented a few decades earlier.
I am actually part of a trial at John Hopkins with Ocrevus. I will be given the infusion in the stomach and it will take 10 minutes instead of the several hours the infusion takes originally. They tell me it’s well tolerated so I am hopeful. My sons name is Sora so I am SorasMom by the way😉
Hi Katrine 👋 I agree with it's unpredictability 😬 got a clinically isolated symptom of MS in September 2014 because of simple partial seizures, then my clinically definite diagnosis in 2015 because of vertigo and no feeling on the left side of my face. I was 21 when I got my full diagnosis, and was studying nursing 🫣 was started on copaxone, and was on it for 5 years. I went from being able to be on my feet 12+ hours a day, to barely being able to walk or leave my house because my MS is aggressive. Went on ocrevus in 2021, and I was able to leave my house more often, and able to be on my feet without support more 😁 I think it's more the steroids that help 🤔 I remember being on IV methylprednisolone while in my 27 day stay in hospital before I got started on ocrevus. I was able to start being able to walk again, and able to walk up a slight incline from the ward to the main entrance to meet my husband 🙌 in 2023, I got married, and both my wedding and the ocrevus infusion was meant to be on the same day 😬 however, a quick call to my MS nurse had me get ocrevus 2 weeks earlier, and I was able to walk down the aisle with my stand-in dad (mum's partner, who I have a good relationship with). I think that's more because of the steroids you get as a pre-infusion medication, and the steroid pills I took that morning 😅 but, was still able to walk the aisle 🙌 I tried kesimpta the other year, but having a seizure with the need to be taken to A&E, and doing my injection the day when I came home without telling my MS nurse got me put back on ocrevus quickly. I don't think me having seizures was due to the kesimpta, because I was unable to empty my bladder, and so I was in so much pain I couldn't get to sleep. That's when I realised my seizures are sleep-sensitive, rather than photosensitive that's commonly warned against more 😅
If you live in the UK, and have questions about how to properly apply for PIP, without breaking down because you got a letter saying you're not eligible, you can definitely ask me questions ❤️🫂
welcome to the group Katrine. Sorry to hear about ur diagnosis. However, U will find lots of great advice, experience and feedback in here.
My three main recommendations is to stay positive & active, eat right and stay away from drinks & smoke. Not everyone get worse as time passes. Good luck dear.
I have taken Ocrevus a few times. I believe many members here are on it. There are older posts about starting it, and you can search the group posts for tips.
Give yourself a year to wrap your head around MS. I wish I had found this group earlier and stayed off the internet more (pub med searches mostly, but soooo many hours wasted freaking out 😬🤣). Stick to your normal life as much as possible.
My story is I went undiagnosed forever, and by the time I was, I was also being diagnosed with infertility. I had fabulous medical teams and welcomed my first child about a year after diagnosis 🎉
It seems at times in life that when we thought we got the worst news and are trying to take it in we are served with something equally bad or worse. I just went through a 3 year long difficult divorce before I was diagnosed.
I am very happy for you and your family, after all life goes on and there is hope❤️
Hello Kathrine, You are now part of a caring, welcoming and awesome community! I was diagnosed in 2008 with Relapsing Remitting MS. My Disease Modifying Treatment is Copaxone 1 40mg injection 3x per week!!!! Early on, I had many flares with hospitalizations. Healthy lifestyle, vitamin D, spiritual lifestyle has been my “super power..”. I still walk in Walk MS and with my church in our 5K “ Anti Human Trafficking “ Awareness Walk/Run! Just believe in your healing power; tell MS you’re STRONG and Wonderfully and Beautiful!! ❤️. Nee Cee
Thank you for your reply, you sound like a true fighter and an inspiration
I too believe that lifestyle matters. Taking care of yourself physically but also mentally and spiritually. MS is an autoimmune disease after all and I was once told by my doctor that when you have flare up’s in your autoimmune disease you may want to consider your overall lifestyle; how you are taking care of yourself. That it’s like your body trying to tell you that you need to make a change. I think there could be some truth to that.
I too would like to take part in some groups in my nearby community, I believe that’s empowering.
I’ve been diagnosed with MS since 2018.I’ve taken several medications before taken Ocrevus, Ocrevus was the only medication that has made many changes in my MS, before taking Ocrevus I was constantly having relapses. I also have optic neuritis. I’ve come along way thanks to God who gets all the praise & glory along with Ocrevus. I’m currently on Kesimpta which has done me good also. My neurologist took me off of Ocrevus do to my age. Each diagnose of MS is different I been through it all but I’m still keeping the faith that I’m going to walk again. God bless you & stay strong.
Thank you very much for sharing, I have heard very good things about Ocrevus, some say it’s the best treatment available. I did not know that they would stop giving it to you at a certain age, may I ask why?
My neurologist stated it could weaken my bladder, I’m currently 70 yrs young. Now I don’t have incontience like I had when I was 1st diagnosed with MS. Thank you for your blessings & I wish you well also.
hi. I was diagnosed in 10/23 and started Ocrevus as my DMT shortly after I have had 3 infusions to date without any major side effects or issues during the infusion process itself. At times Ocrevus can cause in draws sinus infections or sinus issues which I have noticed i feel more prone to now days. Good luck! And if have any questions feel free
I believe I was told that I may be more prone to infections, but overall it sounds like you are tolerating it well. That’s good to know, thank you for sharing and good luck to you too!
I was found to be stable after my first full year of treatment and no new lesion at my last scan. It’s been a really good med for me so far. Best of luck
Hi Katrine24, welcome. I have PPMS and have been on Ocrevus since 2019 when I was diagnosed. So far, I haven't had any problems with Ocrevus. I do my infusion twice a year and I'm good with it. I wish you the best with your MS journey. Keep your head up. 👍
Hi Katrine, Oops! I hit reply too early before lol. I was diagnosed with MS in 2010. I have now advanced to PPMS. I wish I had looked into disease modifying therapies sooner. I have been on Copaxone, Avonex and Ocrevus. I tolerated Ocrevus the best. I had no problems with it whatsoever and actually felt better after my first set of infusions. Sadly, here in WA state I was billed about $6,000 AFTER my insurance paid their portion. Luckily, charity care helped me pay the bill. I would love to stay on Ocrevus because it is one of the few that helps with Primary Progressive MS. I simply can’t afford Ocrevus. That is fantastic you found a trial to join. I’m pretty sure you will be very happy with it. Best of luck!😊
I have been concerned about the insurance coverage of Ocrevus. I will get 4 infusions through the trial, not sure after that…I also would not be able to pay that kind of price long term..
I am sorry you are dealing with this. I hope you find a way to get it covered. If I learn anything I will make sure to share.
Hi again. I just wanted to add that according to my bill the entire first set of infusions ( they divided first dose up for safety) cost $159,077.91. Insurance covered most of it with my portion being only $6,325. Before my infusion I had asked if my insurance would cover it. I was happy they would cover a large percent, but I was very naive and never dreamed it would cost as much as my first condo. I just wanted you to know the full amount. I never want any one to get a surprise bill like this. The maker of Ocrevus is good at helping if you call them first but I still have to pay the hospital fees, etc. It’s still extremely pricey for someone living on long term disability and Social Security. I’m still looking for a way to pay for more infusions. I live in a podunk town and can no longer drive so have limited options. I wish you the best though! I’m glad you will be getting the DMT!👍😅
I am only 1 year and 1 month diagnosed. I just started Ocrevus last November. I had a several itching reactions during the initial infusions, but nothing to worry about, itching reactions are quite common (reason I had more than a few is that I had oral pre meds and I have malabsorption issues, my neuro at the time forgot to order IV meds... one of the many reasons I have an MS neuro now!). I'm told it is your body getting used to the medicine, which is why they split it into two doses the first time. And that I should not have as many, if any on my next infusion (May).
I was on Kesimpta before that, it did the job, but I, personally, could not tolerate having the monthly side effects. I'm happy to be on Ocrevus, and not have that!
I never thought of myself as a very physically active person before MS. Now I see that I rather was... I worked out, I did a lot of running around... I did a ton of house work and errands... I really miss it. It took getting to the MS neuro to get on something for the fatigue that helped some. My regular neuro would not put me on but one or two different things and then kept saying there was nothing else out there, but I knew from watching Aaron Boster videos that there were a LOT of other things that could be used. It was a long wait to get in with the MS neuro. But so worth it.
Welcome Katrine24 ! I am not on Ocrevus, but I think it is very good that you are. Not just for the foreseeable future, but for old age. I have read that people who started Ocrevus early on do much better than those who did not. Not just at the start, but as seniors, with regards to brain health. I have done very well, but my concern is how I will do with brain shrinkage and cognitive issues. I was diagnosed in 1985 when there weren't any DMTs available. I was eventually on Avonex, which I tolerated well. I came off of it 2 years ago at the age of 67. The reason is because some think that after a certain age the drugs don't help anymore. Probably because the immune system has aged and isn't as strong in its attack on myelin. It is controversial and so it is a personal decision. My MS neurologist told me something that I did not know and that I think is important for you to know. When diagnosed, with no medicine, no help at all, really, I decided to keep myself fit and healthy, eat well, etc. I was told it wouldn't make a difference. But I took care of myself, believing that if I had a bad relapse I would go into it from a stronger position. As it turns out, I have had a pretty easy disease journey, which my doc attributes to exercise. She said more is known about that now and that exercise helped keep me well and that it is doing more for me now than Avonex was at my age. You wouldn't know I have MS if you saw me, but as I said, I am concerned about cognitive issues in future and brain shrinkage. I am very happy for you and wish you all the best!
The fact that you seem to have been able to remain stable for so many years living with MS is very encouraging.
I am in my mid 40s and was diagnosed 6 months ago. I was told by the neurologist that my relatively healthy lifestyle with regular exercise may have prolonged the onset of MS. I understand it’s more common for MS to appear at an earlier age.
So I agree with you, and even if it’s not directly related, trying to be healthy and active is known for everyone to increase our quality of life.
In some ways for me I feel the MS diagnosis in some ways made me more aware of myself and the choices I make in my life. At least on good days 😊
I've been dealing with it for about 50 years now, but I had a relatively normal life up until 5 years ago. I credit my upbringing and past life for that. I was just a country girl walking long distances and tossing around feed sacks and hay bales. I did have to quit working, and I use a motorized wheelchair when I'm doing any distance walking now, but I still get around inside my house just fine, including doing laundry in the cellar and using a riding mower on the yard. I'm not at all active now, but I think having that in my past has made all the difference.
Hi Katrine24, and welcome! You have already gotten lots of good feedback, and I don't have a lot to add. I will say that if you've been active, stay active. Cannot stress enough how important it is to keep moving. Also, since you are new to the M.S. family, please stick to reputable sites for info. There's a lot of bad info out there, false "cures" and scary stuff. As others have already said, each person with M.S. has a different journey. Although there are many common symptoms, each of us experiences a different set of symptoms. Frankly, over the years, I have found the wildly unpredictable nature of this disease harder to deal with than some of the physical challenges.
Wishing you the best and look forward to hearing more from you. Glad you found us!😊
Hello Katrine, I was diagnosed with RR MS in 10/2023. My neurologist recommend me to start on Ocrevus right away as it is one of the best treatments for MS. Of course I did a lot of data dump research for myself and after two weeks on research I narrowed it down to two treatments which was Ocrevus and Kesimpta.
I had to relapses before in one year and was feeling very fatigued everyday that my wife noticed I just sat in the couch falling asleep and never wanting to do anything. After the second relapse I knew something wasn’t right and it took from July till October to finally be diagnosed with RR MS.
I travel for work every week and needed the right medicine for me and needed help with the fatigue. My doctor put me on high dosage of Vitamin D at 50,000iu (Ergo) Cap RX and I take it once a week. I immediately noticed the fatigue going away and having more energy myself. Hope you can speak with your neurologist and ask about help with the fatigue as I asked and was lucky to get that medication which has helped me going on 1 year and 1/2 on it.
When I started treatment for Ocrevus it was split in three treatments and I noticed a had a small allergic reaction but with Benadryl it helped me and now the infusion clinic knows to give me more Benadryl before I start the infusion to help and I haven’t gotten any reactions and in May it will be my 4th infusion.
Ocrevus has helped me a lot and my neurologist has been very helpful as he is certified with MS. Finding the right neurologist and primary care doctor really helps. I also spoke with my neurologist to recommend any additional vitamins that I can take to help with my MS and symptoms.
Even though it lowers my immune system I am cautious when I travel, wearing a mask, after my treatment, I tend to quarantine myself as much as possible the first two weeks as that is when your immune system is the most depleted after treatment.
I have not had any relapses since starting Ocrevus back in Nov. of 2023 and been keeping up with my annual MRIs to make sure I have not had anymore relapses.
I wish you the best in your treatment and welcome to an amazing supportive community.
Welcome! This is a bit off topic, but when anyone newly diagnosed joins us, I always tell them to check out Dr. Aaron Boster's videos on YouTube. I read so many posts about him, but I thought only sketchy people post on YouTube! Happily, I was wrong. He runs an MS clinic in Columbus, Ohio, and his mission is to teach MS patients how to take care of themselves between neurology visits. He has a real gift for explaining difficult things in ways you can understand. He's also very funny!
I would pay special attention when he talks about learning to advocate for yourself. You will notice that's a theme on this site, as well. There aren't enough neuros to go around, and the ones we have tend to have a ton of patients. At a lot of practices, things tend to fall through the cracks and you must become comfortable with following up, challenging things that don't make sense to you, and letting your doctor know, by message or phone calls to their office whenever you have a question or a new symptom that lasts more than 24 hours. A big part of a neuro's job is helping to manage your symptoms, even seemingly minor ones. If they give you a medication for a problem that bothers you, and it either doesn't work, or it gives you side effects you can't live with, call them and ask for something else. If you always wait for your next appointment, you run the risk of either forgetting, or having such a long list of problems (or questions) that you can't get through the list in one appointment!
I'm very glad that you found us, and I wish you the best. ❤️
You found the right place here, Hi & welcome. My name is Mary I have been on Ocrevus over 7 years & started my 8th Jan 25. I have been diagnosed just over 30 years. We all have a story & they are all different as we all handle this disease differently & I as well as many others here handle it differently now than I did when I was first diagnosed.
Some days you just want to rant & rave & this is a good place to do it. Some days you just want to cry your heart out & again this is a good place to do it. We help each other the best we can, we cry together, laugh together & celebrate our victories TOGETHER! So welcome sister glad to meet you wish it was for a better reason BUT any ole port in a storm. Mary
hello, I have been taking Ocrevus for a couple years now and I do do not see any improvement or decline. I am being told that I have no new so it has to be some aspect. Please try to stay stress-free and as active as possible.
Hello and welcome to this forum, Katrine24 . I have been on Ocrevus since 2018, and I was on Tecfidera before that, and on Copaxone when I was first diagnosed, in 2006. I know that Ocrevus weakens your immune system but I have not had too many issues regarding this. I have not had any relapses or new lesions since my diagnosis of PPMS, but I have been slowly getting worse. I am thinking of de escalating my DMT to one that is not as aggressive because I have been on Ocrevus for 7 years, no discernible changes, and I am over 60. I wish you success on Ocrevus as it is a very good DMT. You can visit mymsaa.org for for ms resources. You have many members responding to your post with a lot of good resources. I look forward to hearing more from you. Keep Smiling
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