Kesimpta for Multiple Sclerosis User Reviews
Kesimpta has an average rating of 7.0 out of 10 from a total of 67 reviews for the treatment of Multiple Sclerosis. 52% of reviewers reported a positive experience, while 18% reported a negative experience.
Reviews for Kesimpta
- Mom...
- Taken for 6 months to 1 year
- November 10, 2022
"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
"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."
Frequently asked questions
- What are monoclonal antibodies?
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- What are 8 key Kesimpta side effects to watch out for?
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- Kan...
- Taken for 1 to 2 years
- March 18, 2021
"I was included in the clinical trials for this med. I was on it for a little over 2 years. My experience wasn't great, although I didn't develop any new lesions. Despite that, my MS still progressed to me needing a cane to assist with walking most of the time. My immune system was completely affected but I didn't develop common illnesses, instead, I developed shingles 4 times in less than two years, cellulitis on my face and ear, meningitis, and I was hospitalized twice - once for three days and the second for almost two weeks. I was unable to stand up quickly for most of the two years due to dizziness and fainting upon doing so. I suffered from throat issues and loss of voice several times as well."
- Kem...
- Taken for 1 to 6 months
- November 23, 2023
"I was apprehensive about starting my course of treatment, but I'm glad I did. I realize this treatment doesn't 'fix' pre-existing issues, but from my own experiences so far (dose 4 now), my mobility and cognitive abilities are much improved. It's not night and day, but it's cleared the fog, and I feel much more like my old self. I've also found my susceptibility to pseudo-relapses has improved also, without any real 'off' days since starting the medication. The first dose was quite unpleasant, with a high temperature, fast pulse, chills that kicked in about 4/5 hrs after it was administered. I took some ibuprofen and slept through it, woke up in the morning feeling OK, no issues at all since. The auto-injector pen is brilliant, very easy to use and hard to mess up, and more importantly, not painful! I'm glad I went down this route rather than infusion-based treatments as each dose only takes a few minutes. The convenience combined with its efficacy is its biggest bonus."
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Your review helps others make informed decisions.- KIr...
- Taken for 2 to 5 years
- November 28, 2024
"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."
- PJa...
- Taken for less than 1 month
- September 29, 2022
"I took my first dose last Friday and really don't want to take the 2nd dose tomorrow. I took Kesimpta around 2 PM and by 6 PM I was having chills and shaking that got worse. What really bothered me was the fever. I didn't have a thermometer, but it was so bad that my vision was very blurry, I had a severe headache, was throwing up, my right leg went numb, I peed myself, my heartbeat was pounding and super-fast, couldn't get off the floor for hours. I'm 55 and live by myself, so I was scared. Don't like this medicine!"
More FAQ
- How long can Kesimpta be out of the fridge?
- How long does it take for Kesimpta to work?
- Where and how is Kesimpta injected?
- Mar...
- Taken for less than 1 month
- October 2, 2022
"This medicine is the worst. I had side effects I ever had. I had a sore throat, itching, legs tightening. Please, guys, don't take this med. Because before I had this medicine, I looked at all the bad comments, and I just didn't think it would happen to me. Wow! But it did."
- Rob...
- Taken for 1 to 6 months
- September 8, 2024
"I started Kesimpta in June 2024. The first shot of the loading doses caused severe flu symptoms, but the next two loading dose injection symptoms were mild. The first maintenance shot went well. The next two did not. Around 44 to 48 hours in, my blood pressure got dangerously high, and my heart rate was very high. I was told that since it happened 2 days after the injection, it was not Kesimpta-related. Quite frankly, I am afraid to take the October injection. I don’t know what to do. I do think the symptoms are Kesimpta-related."
- Hil...
- Taken for 1 to 6 months
- October 3, 2023
"Well, done the 3 loading doses and what brilliant stuff this is! Got the flu type reaction after the 1st, but was expecting that so not a problem - nothing after the next 2 apart from a bit of tiredness. Symptoms - hugely reduced. Buzzing in leg and arm improving massively. Interesting other things as well - I have always been an allergic/inflammatory kinda chick, insect bites, plants, antibiotics, acne etc., etc. well chopped a load of foliage down over weekend AND nothing. Not even an itch. Got bitten as well, and again nothing. Makes you wonder about MS/allergies/inflammation. My body telling me they must be linked???"
- Tes...
- Taken for 1 to 6 months
- September 5, 2022
"I took the shot yesterday for the first time. Taking the shot was painless. I took the shot in my right thigh at 11:30 a.m. I did housework afterward. At 1 p.m., I decided to take a nap. At 3:30, I woke up to use the bathroom. My legs were so stiff that I took too long and urinated on the floor. Then I took a hard fall to the floor. I spent 3 hours trying to get up. My legs felt heavy and stiff. I finally made it onto my bed. I could not roll over. It is the next day at 4 a.m., my legs feel better. I was able to walk downstairs. I am feeling better. I hope that I see improvement in my health."
- kIr...
- Taken for 6 months to 1 year
- July 20, 2023
"This is my third treatment for RRMS. Having been on Brabio and Plegridy and having awful adverse side effects, I needed to radically change my MS management and treatment to something new. I researched a lot into Kesimpta and in August '23, I started on it. Initially, there were many side effects. Initial loading doses induced flu-like symptoms, which would fizzle out after a few days. After about three months, I was just getting headaches after injecting. Now, these did develop into migraines, which sometimes would last for weeks on end. However, after 6 months on it, the side effects settled and I can confidently predict what will happen. I jab, within three days I can get a bit of a migraine, and that lasts a day or two. Due to my job, I get an MRI every six months, and both my previous scans were stable with no symptoms. I feel very positive about Kesimpta now, after a tough enough start. I have loads of energy, feel positive and GOOD which I did not on both previous. I feel normal at last!"
- Den...
- Taken for 1 to 6 months
- September 21, 2022
"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!"
- PGM...
- Taken for less than 1 month
- August 19, 2022
"First injection a few days ago. Felt fine for the first few hours but then got a headache/chills. I wasn't too bothered, it was all pretty mild. But about six hours in, things got worse. Flu-like symptoms, but severe: fever, aches, chills worsened. I tried to go to bed and just stayed there until I had to get up for the toilet. This would’ve been about eight hours in. I couldn't stand on my own and struggled (with my partner's help) to get to/from the toilet. Managed to get back to the bed but had to pull my legs on as I just couldn't lift them. At that point, the chills/headache had gone but I was very hot. Finally, after about ten to eleven hours, things started to get better and I was even able to sleep. Got up once more (around twelve hours) and was able to do everything unaided. Completely fine in the morning. Very uncertain about doing any more as, frankly, it was frightening."
- Inf...
- Taken for 2 to 5 years
- December 9, 2022
"Just some advice for the first injection: if and when fever spikes, use ice packs under your arms and a cooling vest. I didn’t do this until my other half called the nurse in the family. The first injection is the only one I have had any issues with. And I have had well over 2 years' worth of injections. Still good days and bad days. Pretty stable and improved MRI activity. Best of luck to those beginning Kesimpta and continuing treatment."
- Anonymous
- Taken for 1 to 6 months
- January 11, 2023
"I completed Kesimpta’s three loading doses in November of 2022. For each injection, I took one Tylenol, one Benadryl, and a Pepcid later on - I think this definitely helped with the fever, body aches, and nausea. I was previously on Ocrevus but was unable to walk out of the facility after my last infusion (I had switched from the 6/7 hour infusion to the 4 hour one). I didn’t take any disease-modifying drugs for the next year until Kesimpta in November 2022 at the suggestion of a neuro. My lymph nodes in my neck/jaw have been swollen since November 8 (date of first injection), and I have had different infections since (a double ear infection, recurring upper respiratory infections). I feel like I always have a mild fever and am kind of miserable now, haha. I’ve also lost my voice several times, which is the first time that’s happened in my life! My lymph nodes are swollen to the point that it is also making it painful to speak. 0/10"
- les...
- Taken for 1 to 6 months
- September 3, 2023
"I am a 40 yr. warrior, I still walk although Covid injections took a lot of my balance away. Kesimpta has worked wonderfully for me!!! I have done every MS drug out there, but this works for me, minor side effects that are gone after 4 months! I only wish more people were on it."
- Mrs...
- Taken for 1 to 6 months
- September 25, 2021
"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."
- Hil...
- Taken for 1 to 6 months
- October 3, 2023
"Well. Done my loading 3 and really pleased. Got the flu-like reaction after the first, but nothing paracetamol, ibuprofen, and piriton couldn't deal with. Next 2 - nothing apart from a tad tired and a tad itchy. Symptoms = never had one of those major relapse things, but MRI always very busy! Current symptom was buzzing in the left leg and arm, and it’s almost gone! Now less than intermittent rather than constant. A very weird (pleasurable) side effect is that it seems to have switched off my allergy to mosquito bites - normally spectacular reactions, but bitten weekend just gone and nada, not even itchy!! Seems to have turned down my overactive immune system."
- Yar...
- Taken for less than 1 month
- January 24, 2023
"My sibling had their first dosage, and it was horrifying to see the side effects on them, and they had had a terrible reaction, including the common symptoms as well as others. As much as I would like to be optimistic, I still do not trust it, and I am greatly shocked the UK has put this out on the market for use so quick. The only good thing is that it seems easy to administer, the device itself. However, it's the stuff being pumped into the patient that concerns me most. The dosage is too high in my opinion, and it should be lower or adjusted to the patient and their tolerance level. I am scared for my sibling. I am monitoring this treatment like a hawk. I wish somewhere out there, there was a cure for MS or any condition without doing more damage to people's health at all."
- Jay...
- Taken for 2 to 5 years
- November 15, 2024
"Kesimpta has helped me maintain my multiple sclerosis symptoms. Having a monthly self-injection ensures I get my medication. It's easy to use. I've had few side effects from it. I'm grateful I switched to Kesimpta 2 years ago."
- Mar...
- Taken for 1 to 6 months
- October 24, 2024
"I have completed the first four injections. Based on everything I read, I was extremely worried about severe side effects. However, I was astonished at what a mild experience I have had. For me, the side effects have been more minimal than after a flu vaccine. I felt a bit more tired and had a headache. That was it. I injected on a Friday night, I felt a bit weak on Saturday. Sunday improved and Monday I was good to go to work. If I had known this, I would've started the medication many months earlier. It was negative reviews that put fear into me. This is just my experience, but so far I would recommend it. My doctor has scheduled an MRI for three months after I started the medication, and hopefully, it will show that it's working!"
- Moh...
- Taken for less than 1 month
- May 23, 2022
"Just taken my first shot of Kesimpta. I got the explained chills and headache, but I woke up in the middle of the night to use the toilet and couldn't feel my legs. I couldn't walk nor crawl. With assistance, I did what I had to do and checked my heart rate, which was over 140 BPM. I'm in a dilemma to take my second shot, but will seek advice from the MS team."
- Dre...
- Taken for 1 to 6 months
- December 1, 2022
"1st dose was November 9th, no issues! I had a mild headache the next day, but I always get headaches. I already deal with chronic fatigue, pain, and numbness, so no noticeable changes to that! I actually got a burst of energy for about 4-5 days, so that was awesome! I was on Ocrevus for 3.5 years and was sick of the 6-hour infusions, so I asked to switch! The next dose is December 9th! I'm extremely happy that I switched! I'm so sorry for everyone that has had horrible reactions! Take care to all you MS'ers out there!"
- Jac...
- Taken for less than 1 month
- December 2, 2022
"The 1st dose was rough for the loading dose. 1st one, I experienced chills and shakes that were uncontrollable. The absolute worst headache I have ever experienced, and I felt like I needed to vomit but couldn't. Taken at 1900, awoke at 2300, and I wasn't able to fall asleep again until 0400. Did not want to take the next dose, but did. Minor headache, no chills, taken at 1900, headache woke me at 0300, but I was able to get up and take acetaminophen and back to bed. 3rd dose, I had read about taking Benadryl 1 hour prior to dosing with acetaminophen. Taken meds at 1800, dosed at 1900. Woke about 0330, but was able to drink some water and went back to bed. By the 3rd dosing, I believe I was acclimated to the drug, but I am worried about a repeat of the 1st experience now that it is going to go to monthly. I do not see improvements in symptoms, e.g., fatigue, room spinning, tingling in arms and legs. I will update after about 6 months of injection."
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"My brother took one injection each in December, January, and February. He died September 10, 2022, after four and a half months in three hospitals and 11 weeks in rehab/nursing homes. After the third injection, he felt worse than before. ICU doctors said he had a reaction to Kesimpta. He had a heart attack at home; in the hospital, he had recurrent UTIs, pneumonia six times, caught COVID after being vaccinated, a stroke, a mini-stroke, a hematoma from his knee to thigh, clotting problems, drop foot, MRSA pneumonia, a collapsed lung, aspiration pneumonia, and other problems. He couldn't walk after going to the hospital. He stopped carrying on conversations in the hospital. He was tortured by a medication that he thought would help. PLEASE DO NOT take Kesimpta."