Rituximab and Dizziness: What Users Say

• Anonymous
• July 18, 2012

For Rheumatoid Arthritis "I had my first infusion almost 6 weeks ago and the 2nd 15 days later. I had no problems at all during the infusions, which was painless. The day after the infusion, I woke up with the feeling that my hands were burning and tingling badly, that lasted most of the day. After the 2nd infusion, I woke up on and off during the night with my eye burning. I think my mobility has improved a bit, but I hope it improves more over the next couple of weeks. For the last few days, I have had pain in my neck and jaw and feelings of dizziness, hopefully, this will pass. I will update my progress over the next few weeks."

• dub...
• March 26, 2011

For Rheumatoid Arthritis "I have had 2 Rituximab infusions for rheumatoid arthritis, the last one 2 1/2 months ago. I sailed through the infusions with no problem, but 3 or 4 days later, I had extreme edema and burning pain in both lower legs, muscle pain all over my body, felt like I have the flu, and some loss of coordination. I was on 40 mg Lasix for another problem, and my doctor increased it to 80 mg daily, along with Zaroxyl, extra potassium 4 weeks ago, and for the first time today, my legs are normal size. I'll probably discontinue the extra diuretics when I see my doctor tomorrow."

• Lin...
• January 15, 2016

For Rheumatoid Arthritis "I had my first infusion on 12/21/15 and the second on 12/31/16. To date, I have seen no improvement in pain. The only side effect from the first infusion was a severe headache and tiredness for 2-3 days. I have not been so fortunate with the second. I have no energy or appetite and feel terrible. I am shaky and dizzy, and joint pain is horrible. I was on Remicade and Humira for years without complication. Not sure this is worth it or if it is going to work for me. Still hopeful."

• Mam...
• October 5, 2017

For Rheumatoid Arthritis "Have had RA for just under 25 years. Developed rheumatoid vasculitis, and over the past 4 years have been in so much pain, it's like my body completely gave up. Even bedridden for 4 or so months. Finally started the rituxan a little over a year ago. On prednisone and methotrexate as well. I am curious to know if anyone else is taking the same amount as I am? I currently go in every 4 months and get 4 infusions in a row (weekly) each time. I don't sleep for 2-3 days after each infusion, then crash a couple of days. Back pain and achiness for a couple of days. Having memory problems and balance issues. Other than that, it has been a lifesaver, still some pain, but vasculitis has improved. If you can't pay, see if the drug company can assist."

• Anonymous
• June 17, 2011

For Chronic Lymphocytic Leukemia "My husband had been treated with rituximab for CLL. He has had some scary reactions while receiving the infusion, like uncontrollable shaking, and the last time his blood pressure dropped dangerously low as well. He was taken off and given IVs to bring his blood pressure up, sent home, and the next morning he completed the infusion and then his chemotherapy. This time he also experienced dizziness. His condition is deteriorating in other ways, such as severe weight loss. I read the severe side effects of this drug for the first time today and see him experiencing almost all of them. I think we will try to find an alternative. Scary for people with these reactions."

• Dan...
• July 19, 2015

For Pemphigus "The course of treatment was 1000 mg two weeks apart, and one 1000 mg dose six months after. The first wave of treatment brought the pemphigus to only two isolated areas (this is after 7 years of constant open wounds). The side effects were standard: extreme exhaustion and a sense of malaise. Utilizing a cannabis (eaten) treatment to counteract the nausea, it also alleviated the nervous reactions to stressful stimuli (not a normal user of such). The final treatment was completed in mid-June 2015, the side effects have been considerably less, only one day so far of dizziness and nervous reaction. This was treated with 1/8 g of cannabis eaten with white rice. Overall, being forewarned is very helpful to keep side effects in perspective."

• Kwa...
• Taken for 2 to 5 years
• October 8, 2021

"I was on this for vasculitis. I had several infusions of this drug. I had severe side effects which included nausea, dizziness, bad confusion, and bad hair loss. I took four infusions and could no longer tolerate the side effects. They got worse each time. Thank goodness my vasculitis has improved somewhat. I’m not taking this again unless it’s a life-and-death situation."

• Din...
• Taken for 1 to 6 months
• January 31, 2025

For Non-Hodgkin's Lymphoma "First chemo (mini R-CHOP due to age of 81). Rituximab given via IV. No side effects at all. Second chemo, Rituximab given in the stomach area subcutaneously. Two days later, struggled to walk when getting out of bed. No pain. Just very clumsy and wobbly. Never any trouble walking like in my 81 years. Dissipated some after an hour, but remained to a lesser degree. Will see what happens tomorrow."