Kesimpta and Migraine: What Users Say

• Mom...
• Taken for 6 months to 1 year
• November 10, 2022

For Multiple Sclerosis "I was on Tysabri for 13 years and became JCV+, therefore my medication had to change. I started Kesimpta, a shot you do yourself once a month, but I have felt awful since the first injection. I am now 9 months in. I have been having muscle spasms galore, migraines for 9 days straight after taking the shot, my legs are so heavy, and drop foot has gotten a lot worse. Overall, I feel like crap. I am in touch with the doctor, and all I keep being told is to wait for the MRI in November to see if it is working. I don't think it's working, I feel like I am progressing rapidly. I did great on Tysabri, and I want to go back to that, but I don't think the doctor will allow that. At this point, I'm ready to go all off everything, but I know I will progress even faster. I am lost."

• Pat...
• Taken for 1 to 2 years
• March 24, 2023

For Multiple Sclerosis "I have been on Kesimpta for almost 2 years. It’s my first medication for RRMS. At first, it was okay, then I started getting sick all the time. I can’t keep up with the colds and sickness, no immune system. It also seems to affect my smell, which I’m guessing comes with tongue issues - horrid sores, a thick coating of fur, and very sensitive. The worst part is being sick all the time and the migraines, not being able to taste or eat due to sores and mouth ulcers. Oh, I also need to see a cardiologist and be on blood pressure medication at 31 years old and wear a halter monitor for two weeks because my heartbeat is so fast and irregular - 116 resting. I stopped taking it for three months while I had a tooth infection and felt better. My neuro urged me to keep taking it until the next MRI. I don’t want to be unprotected from progression, but I also need quality of life. I despise having to take this drug."

• KIr...
• Taken for 2 to 5 years
• November 28, 2024

For Multiple Sclerosis "This is my second review of this DMT. I've now been on K almost 2.5 years and recently have started getting negative side effects directly related to my injections. Severe long-term migraine, painful swelling of the LH side of my face. The migraines have been so bad of late that once they are triggered, it takes up to three weeks to dissipate, thus, I've been unable to work for three months. I now get one good week a month of feeling normal, just prior to injecting. The pros are I am in remission with stable MRIs and good bloods, but overall well-being has really struggled of late. I had a great first two years, but despite me being very healthy with good blood results, etc., my well-being has diminished a lot due to consistent migraines."

• Den...
• Taken for 1 to 6 months
• September 21, 2022

For Multiple Sclerosis "The first three doses gave me flu-like symptoms and migraines. I felt like I was improving…at first. Less falls, and better balance. However, after taking August’s monthly injection around the 1st, I developed a kidney infection. Because I was in so much pain, extremely weak, with week-long diarrhea, the ER gave me IV antibiotics and a bag of fluids. I’ve been through two rounds of oral antibiotics, yet it’s 9/20 and I can’t seem to shake this infection. I’m drinking plenty of fluids, like 4 full Yeti cups of water mixed with cranberry juice, but my urine output is low, I’m swollen all over, and I have flank pain with extreme fatigue. My neurologist visit is this Thursday…9/20. Honestly, I’m uneasy about what’s happening to me. None of these issues before Kesimpta. September’s injection is still in the fridge. Ask lots of questions if you’re offered this treatment…wish I had!"

• Mrs...
• Taken for 1 to 6 months
• September 25, 2021

For Multiple Sclerosis "Migraines. Intense nightly migraines. I think this is more an issue if you suffer from any way, but I hadn’t gotten them in over two years, so when they returned so aggressively, I was shocked. Then my neurologist expressed that another patient of hers also has been getting them since she started on Kesimpta. I love the ease of use, but not worth literal hours in bed from migraines."

• Kes...
• Taken for 6 months to 1 year
• May 19, 2023

For Multiple Sclerosis "I'm on the 7th month of Kesimpta. I was 2 days late for the injection. I got severe, agonizing chills, body pain, and migraine, worse than the loading dose. A week before the injection, usually my best time, my heart rate went down so low I was afraid to go to sleep, my urine was dark even when drinking lots of water, and my body hurt. I wish doctors would approach prescribing Kesimpta with these side effects in mind. It feels condescending to be told that these side effects are acceptable and don't require anything beyond ibuprofen. If I had to do this more than once a month, I'd quit. Bimonthly dosing would be great. I'm worried about my organs. I haven't had an MS flare since starting, but the injection itself is worse than having one. I'm getting an MRI in 3 months, and I'll know if I should stay on it. The only reason I recommend it is that there aren't incapacitating stomach effects like Tecfidera or multiple injections like Copaxone."

• IHa...
• Taken for 1 to 6 months
• April 27, 2022

For Multiple Sclerosis "About to take second dose. I don’t like how I feel on this drug. Migraines are worse. I’m more fatigued. I began the drug because of its ease of taking once a month via self-injection. I wanted to go back to work full time. However, I’m too tired to do the job. Can’t think clearly because I’m too fatigued. Going back to Tysabri."