Dizzy and I have not had the best time with our MS recently. After our relapse after Easter last year, we had a further MRI in November, which showed another relapse and further new lesions. 🙁 This means we are now being bumped into the highly effective level of medications available, with our choice being between Ocrevus and Kesimpta.
Now this decision we have found a little confusing, as these two treatments are very similar, and to help us decide Dizzy has been doing a lot of research into how each one works and the pros and cons. For anyone who stumbles across this post, we are not specialists (although Dizzy will tell you that she is a neurologisty donkey! 
), and the pros and cons that apply to us, may not apply to others.
Also, please let us know if you have anything to add to these. We always love to hear other peoples experiences/opinions. If you are also having the same tricky decisions as us, let us know! And hopefully this little post will be of some help to you too.
Ocrevus (Ocrelizumab)
How does it work?
It works by targeting a marker of the surface of B white blood cells (a type of lymphocyte). Once it finds these cells, it then destroys them, which means they cannot go on to be naughty and attack the central nervous system.
Who can take it?
Ocrevus is for people with relapsing remitting MS and primary progression MS (currently the only treatment for this kind of MS).
For RRMS, it is an highly effective drug, and is seen as a high level form of treatment. It is for people who has active or very active MS.
How do you take it?
Ocrevus is a six monthly infusion. This means you do need to spend the day in hospital, where the infusions will take several hours. It is only twice a year though, so it does enable people to carry on, without thinking about their treatment the rest of the time.
What are the benefits?
Ocrevus reduces relapses by about 70% (some say as high as 78%) and disability by 50%.
What are the side effects?
- Infusion related reactions, such as headaches, rashes, sickness and fever
- Increased chances of infections
- Flu
- Bronchitis
It is also common for people to have a small period of feeling a little rubbish just before an infusion. This is immediately rectified with the next dose of treatment though.
Kesimpta (Ofatumumab)
How does it work?
Kesimpta is very similar to Ocrevus, so this part is the same 🙂 : It works by targeting a marker of the surface of B white blood cells (a type of lymphocyte). Once it finds these cells, it then destroys them, which means they cannot go on to be naughty and attack the central nervous system.
Who can take it?
Kesimpta is for people with active and very active elapsing remitting MS..
Like with Ocrevus it is seen as a highly effective form of treatment, and has been proven to reduce the number of relapses and slow down the build-up of disability.
How do you take it?
Kesimpta is a monthly self-injection that you can do a home. It is delivered to you in pre-filled automatic injection pens (there is no manual injectable option for administration)..
The first three weeks are a little different, called the loading weeks, as they require one injection per week.
What are the benefits?
Kesimpta reduces relapses by about 70%.
What are the side effects?
- Injection site reactions (itchiness, pain, swelling and redness)
- Increased chances of infections
- Chest infections
- Head colds
- UTIs
It is also common for people to have flu like symptoms during the first three loading dose weeks, but this does ease quickly for most.
Both of these drugs are immunosuppressants. They can increase the risk of more serious infections, but tests are done prior to check that you’re not secretly carrying any viruses, and that it is as safe as possible for you go ahead with the treatment. It can also be advisable to be careful during cold/flu seasons, as both can make you more susceptible to these. .
For us Ocrevus was very tempting as it has been licensed on the NHS since 2018, in comparison to Kesimpta, which has only been since 2021, and I do feel a little happier on medications that have been around for longer. But ultimately, we have decided on Kesimpta. I am not very good with needles, and I worked out that with Kesimpta, stabby time wold only be around 60 seconds over six months, compared to Ocrevus, which would be around 4-6 hours.
I should be starting in the next few weeks, but I am finding it hard to be enthusiastic. This year, will mark ten years since diagnosis, and so far none of the treatments I have tried have worked. But at the same time, maybe this will be an MS anniversary treat, and it will be the first one that does make a difference. 🙂 xxxx
Kesimpta is a good choice! I have been on Kesimpta now for a year after a period of relapses (diagnosed with RRMS since 2018) and am really pleased that I have had absolutely no side effects and no new relapses or lesions! I have been on Avonex and Tecfidera previously and really struggled with the side effects of both of these, so Kesimpta has been a very welcome relief. I also really like that it’s only monthly, I feel like I can go weeks at a time now without thinking about my MS which has made my outlook on life so much more positive! The actual injection pen is so much easier to use compared to the Avonex pen too so self-administering is a doddle! Really hope you get on as well with it as I have!
Thank you so much! My first injections are being delivered on Wednesday, which I am a little scared about. It really helps to know that people are getting on well with it and not experiencing many, if any side-effects. 🙂 xxx
Best of luck to you and many blessings, I found this information perhaps it can help you, All the best to both you and Dizzy from Dotty and me and my two cats Freddie and Morticia,
https://www.drugs.com/medical-answers/kesimpta-ocrevus-3571044/#:~:text
Awww, thank you. I really appreciate it, and that does help. The first injections are being delivered on Wednesday. xxxx
Sorry to hear you and Dizzy haven’t been feeling well. Sending much love and light for better, brighter days!
Thank you 🙂 xxxx
I really, really hope for the best outcome for you! Hoping the new med works out well with little or no side effects!
Thank you so much. The first injections are being delivered on Wednesday. xxx
Oof, ten years, I’m 35+ on chronic migraine, I take Ajovy aka Fremanezumab via a pre filled auto injector, theyre super easy to use, I use a numbing cream about an hour prior to doing the shot and I dont feel anything. If the med has to sit out before injecting to warm up after being in the fridge, check the max time out, I found that the 30 minutes wasnt long enough for it to warm up so now I leave it out from breakfast time and do the injection around 4pm. Mine are also every month.
I really hope this treatment works for you, did they give you a time scale for knowing if it works or not?? I was told 3 months for mine.
Good luck either way though, my great aunt had MS. I’ll keep thinking good thoughts.
Thank you so much. And thank you for the reminder about asking about leaving it out the fridge before injecting – I had completely forgotten about that. xx I will have an MRI 6 months after starting, so hopefully that will be good news this time. The first injections are coming on Wednesday. xx How quickly did your injections work for our migraines? xxxx
I have Parkinson’s disease and no experience with the medications you are dealing with here. For the Parkinson’s I take medication 4 x a day and drink a large glass of water with each pill. I don’t know what to say about the choice you are faced with. Maybe the one with the berst chance of avoiding relapses? I wish you all the best . Let us know what you decide.
Hi Anne, I am so sorry that you’re dealing with that. MS and Parkinsons are both rubbish to live with. How are you managing? With these meds, they both work in the same way, so have the same level of reducing relapses. I have gone for Kesimpta, and the first injections are coming this Wednesday! I’m scared! xxxx
I wish you the best of luck with your meds
I had the same struggle when I had to switch from Tysabri. I ended up choosing Ocrevus. One thing that is for sure…. Choosing is so hard! Best of luck!
How are you finding Ocrevus? xx Choosing is the worst part. My first injections are coming on Wednesday, which is really scary. xxxx
Sorry So late in responding. Ocrevus has done its job, meaning I don’t have any new lesions showing on my mri, but I have a whole mess of new physical problems. At this point, I’m not going to blame Ocrevus or even MS, until I work on some of the other things I need to change. ( eating better, sleeping better etc) I quit smoking 3 weeks ago and thats enough change for now. I wish you the best and look forwarding to hearing what I hope are positives about Kesempta
Not nearly as bad as I’ve been at responding… 🙂 I am really glad that there are no new lesions and that you quit smoking! That’s a massive thing! x An MRI in August confirmed another relapse for me, but we are giving Kesimpta a little longer, so hopefully it will redeem itself. 🙂 xxxx
Convenience of at home injections vs travelling to the hospital for an infusion would definitely be a plus once you’ve overcome the self injection aspect, if needles bother you. I would think
this would resolve easier or quicker with the use of a self injector.
I’m considering Kesimpta for myself despite my fear of needles from a bad memory regarding a simple booster shot when I was about 8 and I flinched, pulling away and omg the syringe somehow broke leaving the needle in my arm. But, I’m a big girl now so I will overcome my reluctancy towards poking myself with a needle and plan to give Kesimpta a try in the very near future.
Best wishes and hoping all goes well for you. 😊
That’s what I thought, and as I get fatigue really badly, going to the hospital for an infusion would wipe me out for days. The first injections are coming on Wednesday though, and I am feeling really nervous. My plan is to get my partner or dog to do them while I look the other way. 🙂 I hope it goes well for you when you do make the change. xxx
I have my first set of Kesimpta pens in my fridge just waiting for the green light from my Neuro. There is a bunch of regional neuroradiologists attempting to rule out PML before giving the go ahead to start. Waiting is the hardest part.
Have you had the go ahead yet? I hope you have. xx My first set is being delivered on Wednesday! xxx
I took both of these. While I LOVED the infusions since they were only twice a year i would get allergic reactions. My neurologist then put me on kimsepta. I dislike needles. A lot. My husband had to inject me, but their online pharmacy is super helpful. Even when I don’t want their help they will call me and check in to see that i am ok. I mentioned how i like the infusions more i was told this pharmacy also has an infusion I can speak about with my doctor. Maybe I will.
You’re the same as me. My partner or dog will be doing them whilst I look in the other direction. 🙂 My first set are being delivered on Wednesday. Have you found them ok side-effect wise? xxxx
I apologize i meant to share more. 1) i have a headache and that tends to make me a bit forgetful. 2) Being on Ocrevus my MRIs looked great! I have an appointment with my Nuerologist in early March to set up an appointment for another MRI now that i am on this new drug. I hoping for another good MRI scans. I also take matters into my own hands by changing my diet to no meat, dairy (I was allergic anyway) and eggs. When i read on the science of these foods like mammals shouldn’t have dairy past 5yrs old. Meat including eggs are carcinogenic, it was easy to give those up. Except dairy. It has an addictive property to it that encourages young to keep drinking milk. It also has properties to keep you chunky and grow faster. Anyone who wants to lose weight, remove dairy from your diet. I had to lose 30 pounds. The first 20 was easy, but the last 10 is harder because I am closer to a normal weight. I have high hopes that your new therapy will get you the results you are requiring.
Thank you xx I have also changed my diet, but I have the other problem. I am always constantly trying to put on weight! xxxx
I hope your choice will be the right answer for you Heather … a decade since your diagnosis and I’m sure it feels like double that time. {{{Hugs}}}
I just keep telling my MS that letting this med work would be a perfect anniversary present. 🙂 xxx
Indeed – you need it to go into your next decade, preferably and hopefully with great results!
All these responses are great. Just was recently diagnosed with MS. they want to put me on Onevus. Still trying to process this whole thing. I’m do glad I found your site!!! How are you making out with the injections?
Hi Karen! Sorry, I have only just seen your message. The summer got a bit messy, life wise. x How have you been? I have actually been getting on well doing the injections. I always had a massive phobia, but they really aren’t too bad. I hope your first ocrevus infusions have been ok. x Please drop me an email if you ever want to chat. 🙂 xxx dizzythedonkey@gmail.com