Generic Name: Kesimpta (ofatumumab)
For Multiple Sclerosis "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."
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."
For Multiple Sclerosis "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."
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."
For Multiple Sclerosis "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."
For Multiple Sclerosis "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!"
For Multiple Sclerosis "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???"
For Multiple Sclerosis "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!"
For Multiple Sclerosis "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."
For Multiple Sclerosis "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."
For Multiple Sclerosis "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."
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!"
For Multiple Sclerosis "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."
For Multiple Sclerosis "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."
For Multiple Sclerosis "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"
For Multiple Sclerosis "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."
For Multiple Sclerosis "I have RRMS, this is my 5th med to try. I took the first injection, which of ANY self-injection was the easiest I have ever done (no pain, didn’t even feel it, so kudos there!) waited for the side effects and thought I was home free. I always did great on Ocrevus, like a burst of energy great, so I thought maybe it would be like that. Two days went by and nothing. Then the third day, almost 72 hours exactly, it hit. I got widespread muscle spasms from my back to my toes. I got deep bone and joint pain, even my ear canals and fingernails hurt. I ran fevers up to 104 all night. By morning, I just felt tired and VERY sore for the rest of the day, for 3 days I was very sore and slow moving. Not sure if I can do this since I am a mom, too. But desperate to slow down my progression. Not sure what to do."
For Multiple Sclerosis "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 peoples health at all."
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."
For Multiple Sclerosis "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."
For Multiple Sclerosis "I just had my second dose of Kesimpta yesterday. It's fantastic. I was previously on Ocrevus for a year and a half, and it floored me every time for at least a week. I had to take time off work as I wasn't able to function. Kesimpta is a game changer for me. No side effects for me, and it's super easy to self-administer. I am over the moon with it and cannot recommend it highly enough."
For Multiple Sclerosis "I was diagnosed with RRMS in March 2021 and went with Kesimpta as my first treatment. The loading doses were rough: flu-like symptoms, incontinence, extreme fatigue. I did have a flare in between in the 2nd and 3rd loading doses. I almost fell while on the treadmill and had trouble walking around my house. Also had other new symptoms, which prompted an emergency brain MRI. Neuro said my body may have been adjusting to the med change, so I continued on the monthly injections to this day. Annual brain and spine MRIs this year showed no new lesions, atrophy, or black holes. The main symptom was extreme fatigue, usually the week before my next shot. It used to be a lot worse in that I would have to take that week off from working out, which is a big deal for me, as exercise is very important to me. Now I am able to workout 5-6 days per week and I love it. Of course I still have the usual daily fatigue and other symptoms that come with MS, but I am able to still work, exercise, drive, etc."
For Multiple Sclerosis "I have completed the loading doses for the first three weeks. This week is my week off before the permanent fun begins. First reactions were pretty miserable. About six hours after my injection, I started shaking and was absolutely freezing. I had a mild fever, about 1°. I could not get warm, and I live in South Florida! The shaking stopped after a couple of hours and then I started getting really hot. I had a couple degree fever by then. And I was hot, hot, hot. By mid-afternoon the next day I felt 90% fine. The second injection was way better and I only got a mild fever and a headache. The third week was better still. A mild headache and about a half a degree fever. But now, during my off week, I have been feeling really tired and frequently mildly nauseous. I don't know what that means. Overall though, I feel like this is way easier than how I felt during my 14 years of Avonex."
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 & 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."
For Multiple Sclerosis "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!"
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