Ocrelizumab and Fatigue: What Users Say (Page 2)

• Bet...
• Taken for 6 months to 1 year
• May 2, 2020

Ocrelizumab for Multiple Sclerosis "Properly diagnosed PPMS last Sept. Had first Ocrevus two (split) treatments in November. Had MRI before first full dose, which showed new lesions on the brain. Infusion was 2 weeks ago and feel so fatigued, but will see what the next MRI shows. I’m going to keep persevering with the Ocrevus - this fatigue may be short term. I have not noticed any other difference, except I’m not tingling as much. I’m in Australia and it doesn’t cost anything."

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

Ocrelizumab 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."

• Tru...
• Taken for 1 to 2 years
• August 5, 2018

Ocrelizumab for Multiple Sclerosis "I was diagnosed with MS in very early 2002, almost 7 years after my one (and thus far only) MS episode, which for me was optic neuritis. Nevertheless, brain MRIs show numerous lesions, and my quality of life has taken a substantial hit, resulting from severe fatigue, sexual dysfunction, an episode of severe depression and anxiety, which took almost a year to get under control and for which I'm still receiving treatment, etc. In a sense, I can say that the three MS therapies that I've been on have been equally effective because I have yet to experience a relapse while on any of them. I switched to Ocrevus based on my conclusion that MS continues to damage your CNS whether or not you are aware of symptomatic changes. And I thought that it was time to switch to a therapy that is believed to be more powerful than many. I have been very pleasantly surprised by the minimal side effects that I've experienced thus far. So, I am able to report that I'm happy with my Ocrevus experience."

• Pet...
• Taken for 1 to 2 years
• December 7, 2018

Ocrelizumab for Multiple Sclerosis "I have been on Ocrevus for 1.5 years. I just had an infusion three days ago. As with all MS meds, you are never sure if it is doing anything. I have no new lesions and seem to have areas in my legs that I can feel. My hands have not changed. Still numb, and fatigue is the same. Over the 20 years, I have taken Betaseron, Copaxone, and Gilenya. Betaseron was the worst. Copaxone was good. I really am unsure if there has been an improvement by any. I just get worse and pay a lot of money."

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

Ocrelizumab 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."

• Leo...
• Taken for less than 1 month
• November 26, 2020

Ocrelizumab for Multiple Sclerosis "Had my first Ocrevus 1/2 infusion, get my next one in 3 days. No negative side effects beyond fatigue during infusion, from Benadryl. I have noticed that my legs feel a bit lighter, and in the last 4 days, my feet do not drag as much when walking. Hoping this continues! Time will tell..."

• Mar...
• Taken for 1 to 2 years
• September 12, 2021

Ocrelizumab for Multiple Sclerosis "After my dx, I chose Rebif. One year later, my neurologist suggested a new treatment that would alleviate the muscle aches, tiredness, stomach pain, runny nose, skin discoloration, and elevated liver function test associated. When I started this drug, I tolerated the introductory split dose but should've stopped after the 1st full dose WHEN I STILL HAD THICK HAIR BEYOND MY SHOULDERS! Every infusion to follow is split in half, they say the symptoms will subside. They didn't, they got worse, and now I'm somewhat of a weak hermit. My stomach and calves hurt, I don't recognize my face or my handwriting, and when I talk to them about the side of my face that droops, the hemifacial trigeminal twitching, they attribute it to caffeine! My skin is dry, my scalp itches, and I develop a rash on my chest, neck, and ears after infusions. I can see my scalp, my hair is thin, I have headaches, no strength, and zero energy. I don't care about lesions, and I don't mind wearing face masks."

• Bel...
• Taken for 6 months to 1 year
• December 19, 2024

Ocrelizumab for Multiple Sclerosis "When I first started treatment, it was awful. During the first two infusions, I developed a rash and a headache, and they had to stop the drip for 30 minutes to an hour before restarting. Physically, it wrecked me. I ended up needing anti-anxiety medication because the experience was so overwhelming. The fatigue was unbearable—I couldn’t move some days and had to take modafinil just to get out of bed. My body felt so heavy, I’d get out of breath easily, and even yoga became impossible—I’d have to run out to throw up. It felt like poison, and there were moments I wanted to give up. But my neurologist told me to stick with it for 12 months before considering a change. As hard as it was, I trusted them. Now, looking back, it’s amazing to say I wouldn’t change my treatment. Over time, things improved, and it’s been life-changing. It was the hardest thing I’ve ever done, but it was so worth it."

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

Ocrelizumab 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."

• Pet...
• Taken for 2 to 5 years
• June 24, 2023

Ocrelizumab for Multiple Sclerosis "I’ve been on Ocrevus for 5 years, and my only relapse in that time was a pseudo-relapse after my first half dose. After infusions, I typically feel very fatigued, bad headaches, but after 2-3 days, I normally get better and feel awesome. My last infusion, 2 weeks ago, I felt horrible for about 5-7 days. This is my 5th MS therapy and the only one that’s worked this far. Considering my symptoms haven’t been worsening, with no new symptoms and no significant relapses, I would definitely recommend anyone with RRMS talk to their doctor about starting this therapy."

• TLC...
• Taken for 1 to 6 months
• October 5, 2021

Ocrelizumab for Multiple Sclerosis "Was diagnosed with MS in 2004 at the age of 26. Started on Betaseron, left knots at the injection site. Copaxone, my body got used to, so I was switched to Tecfidera. Was on Tecfidera for 10 years, loved this med, no flare-up until my last year on it. I was feeling a little weak in my legs, so my neurologist put me on Ocrevus. The first infusion went well, just a little fatigue and headache. Took the second half dose two weeks later, everything was good until a couple of days later, my right leg went completely out. My right arm was so weak I didn't want to lift it. I had an MRI done because of my relapse, it showed I had a new lesion on my brain. This is my first relapse in 10 years. I don't know if it was the change in medicine or if it was just time for me to relapse since it has been so long. My leg was completely out for almost two months, and my arm still has little use. I am going to physical and occupational therapy now. My leg has gotten 70 percent better. Arm at 18 percent, scared to do the next dose. Help?"

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

Ocrelizumab 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."

• Jus...
• Taken for 5 to 10 years
• December 1, 2023

Ocrelizumab for Multiple Sclerosis "I've been taking Ocrevus every 6 months for the past 6½ years. It's been great, no new lesions in 6½ years. It pretty much takes up 1 day every six months, which IMO is much better than the weekly or bi-weekly self-injections. Not to mention the only notable side effect for me is fatigue the day after infusion."

• Jes...
• Taken for 6 months to 1 year
• May 3, 2020

For Multiple Sclerosis "I have PPMS. I was on Aubagio for a short time, which made me very ill, extreme cognitive fog, and just felt like I had a terrible flu for the year I was on it. Then went to Copaxone, which was fine except for severe site reactions. Then my Neuro wanted me on Ocrevus because it’s the first drug approved for PPMS. Have only had my first 2 starter doses and one full dose. The only problem I have is severe fatigue. I just can’t shake it. Just want to sleep all the time. Way worse than just my normal MS fatigue was. My Neuro has assured me it will get better, but so far not. It’s so frustrating. I want my life back. I can’t get anything done. I get my first MRI post Ocrevus done next week, so we’ll see if it’s working. I’m so tempted to go with no meds and try some natural treatments and see what happens."

• Per...
• December 27, 2019

For Multiple Sclerosis "Well, from my experience with treatment with ocrelizumab, I would prefer to have my relapses because at least in between them I had a bit of relief from symptoms. Now I don't get any relief. It makes me constantly fatigued, it's given me extreme lower back pain and hip burning, my body feels like I've run a marathon when I walk, so I'm on crutches. My right leg feels like it has an elastic band around my groin, so the numbness is persistent. I have extreme confusion about everything, and dizziness takes over, so I must sit. It's changed my personality in a bad way; I'm constantly angry and frustrated. I go from being extremely depressed, anxious, and crying about having to leave the house out of fear to the complete opposite, which is laughing about anything and everything. It makes me feel out of control of my body, and I'm constantly in pain and I'm constantly exhausted. This is just everything I've experienced since starting this treatment. It could be different for you."

• MSM...
• Taken for 5 to 10 years
• June 3, 2024

Ocrelizumab for Multiple Sclerosis "I was diagnosed with RRMS in Nov of 2016. I was started on Tysabri, that lasted for 6 months with a severe relapse in July 2017. Ocrevus was just starting to be prescribed. After waiting the required time between Tysabri and Ocrevus, I started that fall. I’ve been on Ocrevus for almost 7 years and haven’t had ANY new lesions. MRIs are also showing old lesions healing. My fatigue ebbs and flows, but if that's the worst of it, I’ll take it. Ocrevus has honestly saved my life. I went from a numb, lagging left leg, numb face, optic neuritis and double vision, to almost pre-MS functionality. It’s also only twice a year that I have to worry about medicating myself. Couldn’t be happier with my treatment."

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

Ocrelizumab 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."

• Ano...
• Taken for 5 to 10 years
• April 9, 2025

Ocrelizumab for Multiple Sclerosis "I experience extreme fatigue 6 to 8 weeks prior to my second infusion each year. Along with the fatigue, I have numbness in my and intense itching. Impacts ADLs, travel, and socializing. Prior, I was fine, felt very well once I had the infusion, my only issue is the effect just prior to the second dose."

• Do-...
• Taken for 1 to 6 months
• April 16, 2023

Ocrelizumab for Multiple Sclerosis "60 yr old male (for sure). Unremarkable MRI's y2010 brain and CC. Fast PPMS since Dx 1/23. The first symptoms in y2017 were tinnitus and slight dizziness followed by hand tingle. MRI's y2021, 2 CC lesions, and 20+ brain foci. 3/2023 Lt hand is very stiff and swollen with 70% loss of function/fine motor and left shoulder weakness and pain. Left drop foot with 15% walking difficulty, severe fatigue, dizziness, urine urgency, itchy skin, etc. Strange small pimples reoccur on the head and shoulder. No never vision, speech, or cognitive but lots of frustration. My dx did not require a spinal tap. SP TAP may likely cause complications. First, talk to others that got it. I did. 1st half dose of Ocrevus with premeds methylprednisolone and diphenhydramine - mild sore throat. I denied the methyl-p for 2nd dose and no reaction/nothing. Side effects of methyl-p are what we want to avoid - look it up!! To those who say Ocrevus has made it worse, I say verify you are 'actually' getting the 'real $$$$$ med' in your IV. The jury is still out."