User Reviews for Kesimpta to treat Multiple Sclerosis
Kesimpta has an average rating of 6.1 out of 10 from a total of 41 reviews for the treatment of Multiple Sclerosis. 44% of reviewers reported a positive experience, while 29% reported a negative experience.
Reviews for Kesimpta
"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."
"Being realistic about MS meds and side effects, I know they cause pains, fatigue, and other unfavorable side effects. I got through the loading doses, the side effects were akin to having a short but very severe flu. I was prepared for that. I tend to feel like a normal person towards the next dose when enough time has passed. I like not having constant severe pain like I did on copaxone. However, I wish that medical professionals would stop minimizing and undertreating the pain of this disease and how it can be further aggravated by taking DMDs. There are times on Copaxone and Kesimpta that I dread the myalgia resulting from the scheduled dose because I know the aleve or advil the doctor nurse has emphatically declared will cure, won't fully help. The increased risk of sunburn was surprising and the constant scalp irritation even with intense conditioning and hydration has been baffling. That being said, I'm still grateful to be functional with a medicine that only requires once a month dosing."
Frequently asked questions
- Is Kesimpta better than Ocrevus?
- Who is the actress in the Kesimpta commercial?
- How is Arzerra administered and how long to work?
"I was on Tysabri for 13 years and became JCV+ therefore meds had to change. I started Kesimpta 1 a month shot you do yourself, 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 shot, my legs are so heavy, drop foot has gotten a lot worse, overall I feel like crap. I am in touch with the Dr and all I keep being told is 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 I want to go back to that but don't think dr 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."
"The medication has a positive effect on my condition. My mobility has improved greatly. Which, I'm more than thankful for. The negative that I've experienced is currently a breakout on the back of my right hand, a small reaction on my left hand, and both my arms. These are a small irritation, which I'll happily deal with for the positive effects the medication has had/ having on my overall condition."
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"I have been on Kesimpta for 10 months so far. I recently had more scans and found out that I had new lesions and have developed numerous black holes throughout my brain. The damage may have occurred prior to starting treatment, but overall I do feel a bit better so I am continuing treatment. The only side-effects have been fatigue and fever for 3-5 day after injection."
"I took my first dose last Friday and really don't want to take the 2nd dose tomorrow. I took Kesimpta around 2pm and by 6pm 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, 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!"
"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 gone but I didn't develop common illnesses, instead I developed shingles 4 times in less than two years, cellulitis on my face/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/fainting upon doing so. I suffered with throat issues and loss of voice several times as well."
"I have been on Kesimpta for 2 years. I have a bit of a love /hate relationship with it. Pros are it was only one jab a month after the initial start-up jabs. Minimally impacts my life and It’s quick and simple. Cons are that it stings when I do the injection, and I immediately get a 24-hour headache the minute it hits my system. I do get a little more poorly if I get an infection."
"I took the shot yesterday for the first time. Taking the shot was painless. I took the shot in my right thigh at 11:30am. I did house work afterwards. At 1pm 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 4am my legs feel better. I was able to walk downstairs. I am feeling better. I hope that I see improvement in my health."
"This medicine is the worse. I had side effects I ever had I had a sore throat, itching, legs tighting please guys don't take this med. Cause before I had this medicine I look at all the bad comments and I just didn't think it would happen to me wow! But it did"
"Has effectively stopped further MS activity as shown on MR tests. However, after four months of use, I have developed side effects. Severe pain in my leg, like flashes during the night and lasting about three weeks, after sore foot and burning sensation upper side of the foot. Tried massage (professional) which seemed to help. Experience “trigger finger symptoms “ in both hands; thumb and point fingers. Also burning sensation in the leg muscles when getting up from a chair/bed. I have some cramps feet and lower legs. Calf-muscles locking. Goes away when standing up. Have been using Kesimpta since July 2022. So 9 months. Dosage 1/month. Very easy to use. No side effects when taking the medicine (within 24 hours) so far."
"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 till 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."
"I'm on the 7th month of Kesimpta. I was 2 days late for the injection. I got severe agonizing chills, body pain & 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 & 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."
"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!"
"First injection a few days ago. Felt fine for the first few hours but then got 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 8 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 10-11 hours, things started to get better and I was even able to sleep. Got up once more (around 12 hours) and was able to do everything unaided. Completely fine in the morning. Very uncertain about doing any more as, frankly, it was frightening."
"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"
"I love Kesimpta. Not having to worry about veins being blown out by infusion treatment. I did run a 104 fever from first injection, but the second and third were fine. I began to feel my feet again after the first injection. Mixed emotions about that. For the time being I can't really say if I'm slowly getting worse or better. Good and bad days. I did have a icy hot sensation in my leg for a month after taking the first 5 doses which vanished after steroid treatment."
"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"
"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 her 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."
"Felt awful after my initial dose and had signs of an allergic reaction so I was given antihistamines and an EpiPen for my second injection but it was absolutely fine. No side effects. Was on Tysabri for the past 7 years which I loved but my JC virus score was increasing too much."
"I just finished my initial doses. All were different, the first dose I got a sore throat, itchy without a rash, went to bed, and woke up with the most excruciating muscle and joint pain I've ever experienced. Dose number two hurt more than the first, my throat was sore and I was again itchy all over without a rash, but no body aches. Dose three was only the itchiness, but I just didn't feel good for about a week. I had all my injections on a Sunday, for the first two on Thursday I had some minor vertigo and a short-lived temp increase to about 101 F. I rotated my injections on my thighs, however with each injection, I felt like I received an injection in my left upper arm. Very weird."
"I was diagnosed with MS in 2001 I was immediately put on Rebif I couldn’t tolerate it! So I struggled with episodes! When my father died then I started going downhill. Within 2 years I can’t walk without a walker! I can’t work anymore and I struggle every day to function! I tried Ocvervus & I couldn’t get through the first infusion cycle but then my doctor suggested Kesimpta & after the first dose I had immediate improvement! I’m in physical therapy & never felt stronger! I have 13 mm oval-shaped lesion that was found over two years ago & has been stable & no new lesions since taking the Kesimpta so if it worked for me they’re still hope for you! Don’t give up!"
"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!"
"I have finished the 3 week shots. Each time it did get better. I still get tired on the 5th or 6th day after the shot. I was taken off Ocervus cause getting an infusion all at once was shocking my body and I have a weak stomach, to begin with. In the beginning, I know there will be some side effects until your body gets used to it and trying to work with it. I am hoping this will keep my MS steady. Good luck everyone. Think positive"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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"My brother took one injection each in December, Jan. and Feb. He died September 10, 2022 after four 1/2 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 UTI's, pneumonia 6 times, caught COVID after being vaccinated, stroke, mini-stroke, hematoma from his knee to thigh, clotting problems, drop foot, MRSA pneumonia, 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."