Ofatumumab and Fatigue: What Users Say

• 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!"

• Jac...
• Taken for less than 1 month
• December 2, 2022

For Multiple Sclerosis "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."

• My...
• October 23, 2022

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 the 2nd and 3rd loading doses. I almost fell while on the treadmill and had trouble walking around my house. I also had other new symptoms, which prompted an emergency brain MRI. My 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 work out 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."

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

For Multiple Sclerosis "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 or 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."

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

For Multiple Sclerosis "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 days after injection."

• 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."

• Ano...
• Taken for 6 months to 1 year
• April 6, 2025

For Multiple Sclerosis "I have been on Kesimpta for 6 months, and so far, so good. Have had MS since 2007. Before Kesimpta, I was on Ocrevus for about 9 years until my insurance wouldn’t pay for it. My doctor said Kesimpta was comparable, which it seems to be. Been using a cane the last 4 years but staying the same. Brain fog is less, and a little more fatigue, but life has gotten harder, so may have nothing to do with the drug. Will see and will post an update in a few months."