Ocrevus and Hair Loss: What Users Say

• Man...
• Taken for 2 to 5 years
• April 15, 2023

For Multiple Sclerosis "I was on Ocrevus for 3 years, so essentially 6 infusions, I believe. I was diagnosed with MS in 2005 when I was 21 years old and failed most of the baseline MS drugs due to side effects. I had a stint of no medications for 7 years with stable MRIs, but my neurologist convinced me to try Ocrevus since it seemed convenient to just 2 infusions a year. The first few infusions were rough; I experienced really bad inner bone aching. My arms and legs just felt like a toothache. My neurologist said he never heard of this and said it was unrelated. I disagreed. 2 years in, I had 3 teeth randomly crack while eating, needing crowns. Again, my neurologist said it was unrelated to the Ocrevus. By year 3, the hair loss, fatigue, and overall feeling of body weakness have gotten worse, so I decided to skip an infusion to see if it is the Ocrevus making me feel sickly… 8 months since my last infusion and I’m finally starting to feel human again, like I did before starting."

• Anonymous
• July 26, 2021

For Multiple Sclerosis "My boyfriend was diagnosed in 2002, was on Rebif for a few years until he was switched from RRMS to SPMS, and back then nothing else for him. When Ocrevus came out, everyone raved about it. Thom had been without meds for 10 years, so he was pretty anxious to start, especially with all the positive reviews. The first half, he started to experience more leg pain, after his first full dose, he became so weak he was bedridden, could not roll over in bed, could not hold himself up in a chair, I would strap him in. All of his symptoms went into overdrive. His doctor and everyone from Ocrevus groups said give it time. He was on this poison for 2.5 years, along with all of his symptoms worse and the weakness he had hair loss, extremely dry flaky skin, skin lesions, bacterial infection in his nose, extreme constipation. It's been 19 months since his last infusion, and thank God he is 95% back to his baseline. All these doctors are calling it progression, but in actuality, it's this poison."

• Kim...
• Taken for 1 to 2 years
• June 11, 2022

For Multiple Sclerosis "Started March 2020. Did great on Tysabri with severe weight gain, hair loss, gum pain, dental issues, edema, thyroid nodules growing like crazy, extreme fatigue, had to take medical leave from work, can’t sleep, rashes, hard red flaky spots on skin, sweating, rib pain under breast unbearable. They injected me with cortisone. I can’t work out, heavy breathing, legs feel heavy with little activity. Liver enlarged, trace blood in urine, kidney stones for the 1st time with 2 surgeries. 5 months later, more stones. No one recognizes me, skin is dry, nails brittle, red itchy eyes, joint pain, severe anxiety, headaches, heart palpitations, abdomen distention, random bruising especially on feet. Feet very hot and swollen, hands swell, constipated, nose bleeds, dizzy. I have lost my entire quality of life, I was so active. Tests come back “normal” but drastically not normal compared to before I started. Poison."

• Mad...
• Taken for 2 to 5 years
• July 26, 2021

For Multiple Sclerosis "I started this medication in 2017 and finally quit in September 2020. Although my MRIs remained stable, I declined physically. I walked into my first infusion unaided, now I need a full-time cane/walker and a scooter. My mobility has been most affected, other symptoms, which I could have lived with, include hair loss, fatigue worse than usual, and cystic eye styes. The worsening of mobility, balance, and weakening of muscles has made choosing this drug the worst decision I ever made. If I didn’t do CrossFit every day, I’m sure I would be bedridden."

• Jun...
• Taken for 1 to 2 years
• November 2, 2019

For Multiple Sclerosis "I have secondary progressive multiple sclerosis, and I have gotten 4 doses, and Ocrevus hasn’t helped my SPMS. I have noticed that every injection I’ve had, my hair is getting thinner, and my hair falls out quite a bit. I’m going to talk with my neurologist about the problems I’m having and not feeling it’s helping me. My first 1/2 dose, I felt great and wasn’t so tired."

• Jun...
• Taken for 1 to 2 years
• November 2, 2019

For Multiple Sclerosis "I have secondary progressive multiple sclerosis, and I have gotten 4 doses, and Ocrevus hasn’t helped my SPMS. I have noticed that every injection I’ve had, my hair is getting thinner, and my hair falls out quite a bit. I’m going to talk with my neurologist about the problems I’m having and not feeling it’s helping me. My first 1/2 dose, I felt great and wasn’t so tired."

• Anonymous
• Taken for 1 to 2 years
• September 24, 2020

For Multiple Sclerosis "I was diagnosed with MS at age 53, started with Ocrevus 2 years ago (my first and only medication for MS). Infusions always go well, just tired from Benadryl. I do have some dizziness day 3 and 4 after infusion. I lost hair after the initial dose, but none since. I get more fatigued with each infusion. It took me a month after the June infusion to function. The improvement of my leg and body numbness is 100 percent, lesions same but not worse. My body does know after 4 1/2 to 5 months I'm due for it again. I get head and arm pains, but that's MS, not the Ocrevus. Not having drop foot, electrical sensation down my back, or numb from almost half my body is worth it any day. The cost is 6 figures, insurance always covers 100 percent. I have new insurance since I lost my job, so we will see. Lowers immune system, so with COVID, not seeing family and being social is a sacrifice, hopefully that's temporary."

• Hol...
• Taken for 2 to 5 years
• November 10, 2021

For Multiple Sclerosis "Diagnosed with advanced RRMS in 2016 at age 30. Started Aubagio and took that daily for a year or so. No help whatsoever, neurologist recommended Tysabri. Didn't mind the monthly infusions, and my body tolerated it well. No new lesions, but I tested positive for the JC virus a year in, so the doctor switched me to Ocrevus. Have been taking this for the last 2 1/2 years. Have also been tested for the JC virus 1-2 times a year. It was nice to only have infusions twice a year, but the headaches and horrible acid reflux I would get afterward kept me up for days. Noticed thinning hair and major depression, irritability, mood swings lately. The weeks leading up to my infusions, I have daily headaches, dizziness, and fatigue. It has kept my lesions at bay, I don't feel much better. I'm always tired. Keeping tabs on the JC, the doctor was sending me for the wrong tests. The new test shows JC+ again at 2.4, way over. He says stay on Ocrevus, but I'm discontinuing so as to not get PML."

• Mar...
• Taken for 2 to 5 years
• January 11, 2022

For Multiple Sclerosis "This was the easiest of the four disease-modifying drugs I tried. After 2 years, I stopped. The fatigue in month 5-6 was just too much for me. I developed snake scale skin on my arms and lost massive amounts of hair."

• Gin...
• Taken for 1 to 2 years
• June 1, 2024

For Multiple Sclerosis "Dr. Ron Sam Bandam, Clermont, Florida. Some of my side effects of Ocrevus include: Some hair loss, a cough after getting Covid attached to the mucous membrane, constant diarrhea, eczema and dermatitis on my hands, migraine headaches, constant aggregation of optical nerves in the left eye. Prior to getting the medication, I have had MS relapses such as headaches, vertigo, weakness in legs, and fatigue."

• Mic...
• Taken for 1 to 6 months
• June 19, 2025

For Multiple Sclerosis "First of all, I thought how lucky am I! It was coming out on TV in commercials with Jaime Seglar, so this was awesome! After my first dose, I felt great. It was like my brain was awakened. It was like I didn’t have MS anymore. That great feeling lasted for the next two weeks until I received the other half of my infusion. I still felt good, but I noticed that my lower back and legs were hurting. I’m not talking about just hurting, this was bone pain. Nothing I took-I have pretty strong pain meds-would touch this pain. It lasted for about three weeks. Then one day it was gone. I was so happy for about a month, and then bam, it was back again. That deep bone pain. I couldn’t even walk. I never received any more Ocrevus, and eventually, the pain subsided. I had also lost a lot of hair and even developed skin cancers that are now squamous cell carcinomas. If they could have a drug that makes me feel as good as those first two weeks, I’m in."