I could really use your input on your experiences with Kesimpta. If you stopped it because of side effects, please share. I have just finished six months on Kesimpta. I have been experiencing lots of muscle, joint, and bone pain (similar to my awful experiences with Prednisone). Last two weeks I'm also having dizziness. I told my Neurologist about it at my appt a few days ago and she said it might be something going on completely unrelated. She ordered some blood tests which I haven't gotten back yet. I remember when I took my first loading dose, the incredible muscle pain throughout my body was excruciating. Now, six months later, I feel like crap all the time. Anybody else have intolerable side effects from this or Ocrevus which led you to stop taking it? I have another dose scheduled next week and I'm not looking forward to it. Looking forward to hearing from you. And P.S. I am so grateful to you all for being there and sharing.
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Hi jimeka, thank you so much. Before I posted, I looked through lots of posts about Kesimpta and Ocrevus and couldn't find any reports of serious side effects. Interestingly, I checked with drugs.com and found a list of potential side effects that match mine. I will follow up with my doctor. Have a good evening!
I'm sorry to hear about your symptoms. I've been on Ocrevus since Jan 2019 and don't have side effects (except for a few days to feel better after the infusion -2 x per year). Nothing overwhelming at all. (and no new progression on my MRI's since then)
I switched to Kesimpta from Ocrevus a few years ago and was delighted to ditch the memory, speech, and thinking problems I had with the infusions. I had worsening symptoms with each shot around the 3rd month, the worst being skin and leg spasticity. I relapsed at this time, and believed my leg issues were from a new lesion, but the strangest thing was that I would improve 2 weeks after a shot, and then be a little worse than before after the next shot, repeat. I was diagnosed with early glaucoma. I had a pounding heart beat for a week after shots, chunks of hair fell out and I still have bald spots, had a non healing skin issue that ended up requiring medical intervention, cycle changes, developed hip weakness and arm weakness with spasms, and a burning red face that hurt to wash and would peel 2 weeks later. I was started on baclofen for the spasticity. I lasted 7mo on Kesimpta.
I improved leg wise while waiting months for a specialist to tell me to go back to the infusions, and the skin issues did not take long to fade. After my 2nd half dose of Ocrevus, I was back on baclofen, my eye pressures were out of control, and my eye swelled up then I had loss of lashes for 3mo. That was the end of my years of antiCD20 adventures.
My eyes are back to normal, no glaucoma. I don't take baclofen unless I'm sick or do something strenuous. I don't have memory or speech issues anymore, and occasionally make a clever joke. I no longer have "chemo hair" and my lashes look lovely 🥰 I can chase my kids up the stairs 🎉
Hi kdali. Thank you so much for sharing. What an awful experience you went through. Some of it sounded very similar to what I am going through. The first three months of Kesimpta, I felt lousy two weeks post injection but felt somewhat better the second two weeks. By the fourth month, it was all downhill. I have muscle pain, bone pain (mostly in my hips and femurs), severe chills, palpitations for weeks, dizziness, and the list goes on. I completed 6 months and I'm due for my next dose, but I really cannot convince myself to take it. I have an appt to see my neurologist at the end of the month and will go over all this with her. If I quit, can I just stop my next dose? How long did it take you to get back to feeling better after you stopped? Again, can't thank you enough for sharing your experience. It meant a lot to me.
My neuro sent me a message to stop taking it. It took few months for all of it to pass, but some things were gone at weeks 3 or 4. My hair took the longest because it all had to grow out. I bombed myself with Ocrevus 4mo later, and improvements after stopping that were 3mo later, but continued slowly for a long time. You can ask about taking Claritin for the bone pain.
You're welcome! I'm sorry you have had a rough time with it. It was a newer med when I changed and I didn't see people with my issues until after I quit (there's a FB group for the drug), but the one thing everyone with minor issues kept posting was that their side effects lessened or disappeared by 6mo. It wins the gold medal for worst med my body has tried to tolerate 😱
Hi. I had high hopes for this DMT. I have been on 6 different DMT's since I was diagnosed in 2001. Of course, each had its ups and downs, but it seems that now that I am older (63), my tolerance is lower. I decided to skip my shot this Friday and wait til I see my neuro next week. Thanks for the tip about Claritin. Had no idea it could help with bone pain. Hope you have a great day!
I'm in my 40's and have little tolerance it seems 🤷♀️ Copaxone was a skin mess. I got lucky with Mavenclad so far, no nonsense. Claritin is a chemo trick, sometimes it works. I forgot all about it when I took Ocrevus, but it worked when I took Mavenclad. GL! I hope your follow up goes well 🙏
Thank you for your input. It sounds like you made a good decision. It took me a few months to make the decision to start Kesimpta, but as you point out, we never know how things are gonna go!
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