Rituximab for Rheumatoid Arthritis User Reviews (Page 3)

• Sis...
• Taken for 6 months to 1 year
• June 10, 2017

"This is for my rheumatoid vasculitis. This first dose caused a reaction, but the staff was right on the first indication, adjusted the drip, and we continued. It took around 7 hours. The Benadryl made me fall asleep. The second one, two weeks later, went without incident, about 4 hours. Five months later, I have been able to reduce my prednisone intake without a flare-up of RA, and the nerve pain from the vasculitis has remarkably dwindled from lasting and unbearable to very manageable. It doesn't reverse damage, but my sed rate is around 11 (from 30), and if I didn't have to worry so much about the ghastly cost of this med, at this point I have to say it's been most amazing. There is financial help available, I think."

• nan...
• Taken for 1 to 6 months
• January 19, 2016

"I'm still waiting for this drug to really kick in, had infusions September 2015, not yet as well as I was on Enbrel, but had to change due to new rheumo team. Not impressed really-lots of infections, got to the point of wheelchair use in December, previous to Sept never required a stick. Very slowly starting to regain life-possibly am near 40% of the real me. I'm not at work, not driving, am worried for my job. It's been 19 weeks since the treatment, and I want my life back."

• Ram...
• February 3, 2017

"I suffer from pulmonary fibrosis and acquired hemophilia as well as RA. Rituximab has almost completely knocked out RA and has assisted the other two. I don't take methotrexate, but 10 mg of prednisolone per day. Interestingly, I had a sweating disorder pre-infusions, but the drug seems to help alleviate. I started with four infusions a week apart, which became ineffective after six months (Factor 8 levels dropped and RA flared), and my latest dose was given over two infusions at a different hospital six months ago and hasn't yet become ineffective (I am being primed for further infusions). I had absolutely no problems during or after infusions."

• Lin...
• January 15, 2016

"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."

• Hel...
• October 13, 2016

"I had my first rituximab infusion treatment a year ago and think it worked well. But I've felt symptoms coming back for a while now, but after a year, I just had my second treatment. I'm in tomo for my second infusion and hope to God it works because I'm in a bad way, and my pain in my wrist is at the worst I've known them to be! Tiredness never really ever gone for long, but fingers crossed! I feel I should have had it months ago, but what do I know... I'm from Nottingham, England."

• Mic...
• Taken for 5 to 10 years
• April 22, 2020

"I was 46 when I was diagnosed with RA, and my health plummeted. In 3 years, I was in a wheelchair. I tried all the major RA drugs with little or no effect. When I finally received my first infusion, I was up and walking within 3 days. Rituxan has saved my life. I get an infusion every 6 months and feel like anyone else my age."

• Jus...
• November 16, 2017

"I have been on Rituxan therapy since January of 2009. My first infusion included 8+ hours in that chair with immediate shortness of breath. My doctor and the RN stayed with me as they put me on oxygen immediately. A few minutes later, it was as if it hadn't occurred. Suffice to say, it was a long day. Went back 2 weeks later for my second round and no problems at all. I was troubled with insomnia the 2 days after. The RN asked the doctor to lower the dose of saline in the infusion and increase the dose of Benadryl in the infusion. Worked like a charm! So now, 8 years later, I have been receiving Rituxan therapy approximately twice a year with no problems. My RA has not progressed. Just wondering if it is time for a change or if it's not broken..."

• Eva...
• Taken for 1 to 6 months
• April 12, 2016

"I have undifferentiated spondyloarthropathy, MCTD, and SLE. I started Rituxan at the end of December 2015 after Enbrel lost efficacy. I am also on MTX and Plaquenil. My rheum explained that Rituxan works in a different manner from the TNF inhibitors, and because of this, it takes longer to work. While I began noticing Enbrel's efficacy within 2 weeks and was in remission by 3 months, with Rituxan, I didn't even notice any difference until about 10 weeks in. I have slowly improved, but I am not in remission. Prior to Rituxan, most of my joints were painful; after 14 weeks, I am down to about 15. My daily pain level has gone from about an 8 to 4 or 5. My rheum said sometimes patients will see a better response after dose #4. I hope for remission. I will redose in 6 months following the RA guidelines."

• Eey...
• July 8, 2016

"I was diagnosed with RA in 1998 and have been on most of the drugs available. Enbrel worked great for 6 years, then it just stopped. Since then, nothing has worked. I had my first infusion of Rituxan 3 weeks ago, and we had to stop the infusion due to itching in the ears and throat, pushed more steroids, and waited about an hour before restarting with a slower and diluted drip. Had the 2nd infusion last week with no reaction during the infusion. I take methotrexate by injection as well and have noticed no new side effects. Just fatigued for 4/5 days after infusions and always the day after methotrexate. The doctor said to give it 3 to 6 months to begin working. So I will wait with lots of hope!"

• Anonymous
• July 15, 2016

"I had been taking Rituxan, which worked great. My insurance paid for some, and the maker of Rituxan paid the rest, it was great, but when I turned 65 years old, Medicare was the only one paying, and I had to come up with $592.00, which was high for me because I'm retired and I make less money. So I stopped taking it. That was the biggest mistake I made. I could not function. R.A. is not only about the pain, I had no strength in my hands. I could bathe, comb my hair, and get dressed by myself. I tried so many different meds, they didn't work. I then decided I needed to find a way to pay for the medication, so I went back to taking Rituxan. So far, it's a lot better than I have been, but I still have my four weeks isn't up, so I'm hopeful."

• Tan...
• Taken for less than 1 month
• September 2, 2017

"I am very grateful this site exists, and a search for information during my first infusion indicated the scratchy throat and ears I was experiencing were reported by other patients. I called my nurse and was given Benadryl/prednisone, and the drip was slowed. The whole infusion from 9 AM-4 pm resulted in some tiredness the day after but no hand or left hip pain. I had been off Orencia for 10 weeks, got a shingles vaccine, and was on MTX self-inject. I had previously been on Humira for 10 years and developed an itchy chest rash. I had a false positive test for lupus and had to discontinue. I work full-time as a speech pathologist and lead an active lifestyle. Thanks again, fellow posters, and your experience reports are vital for patients!"

• Mam...
• October 5, 2017

"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."

• dug...
• February 19, 2020

Rituximab "I feel for Kid in his comments, I too have severe itching of the skin and have been on Rituxan for almost ten years. I am also always cold and feel like my skin is thinning. I told my rummy, but nothing has been done yet."

• Jak...
• April 26, 2017

"Had 1st infusion of rituximab and experienced tingling in and around my mouth, the white of my eyes turned blood red. Later that day, I had palpitations and shortness of breath. The next morning, I had nausea and severe headaches. By lunchtime, I was so cold I was shivering, despite hot water bottles, and going to bed did not get warm until the early hours of the next day, then I started with a temperature. I have rheumatoid arthritis affecting most joints, the joint pain increased further. It's been 3 weeks since my 1st infusion, my gut instinct is not to have the 2nd. I'm still enduring the side effects daily, however, not as severe as at first."

• Anonymous
• April 12, 2020

"First infusion gave me horrendous anxiety with bad OCD-type symptoms. My GP told me it was from rituximab. My rheum doc says how could my GP know, as she is the expert. Skip forward a year, second go at rituximab, the very same build-up to horrendous anxiety, OCD-type symptoms. Oh yeah, thought I was near going to end up in the crisis mental health unit. Thanks, rheum doc."

• Chr...
• January 1, 2019

"I had my first Rituxan infusion yesterday. I have HMCRG + autoantibody polymyositis and seronegative rheumatoid arthritis. I tested positive for PM in 2015 with a positive muscle biopsy/autoantibodies, with subsequent diagnosis of RA in 2018. History of prednisone, methotrexate, plasmapheresis, and IVIG. Worsening symptoms have led to Rituxan infusions. I experienced throat pain/itching along with itching of my ears and then scalp itching. My blood pressure and heart rate went up during the night last night, requiring me to take a dose of a beta blocker to get them down, otherwise, I tolerated the infusion fairly well. Scheduled for the second dose in two weeks. Hoping to see relief soon and get off of or at least weaned down on prednisone."

• Anx...
• Taken for less than 1 month
• December 23, 2018

"I just finished my first round of treatments with rituximab. After the first round, my condition seemed to worsen. I dreaded going to bed at night because of the pain I know the night will bring. I could barely walk, lost function of my hands/wrists, couldn’t raise my arms, and my neck movement was limited. After my second round, which was 6 days ago, I’ve seen slight improvements. Pain, swelling, and stiffness have seemed to move to different joints. Still hopeful it will work. I have tried Enbrel, Cimzia, and Xeljanz, which brought relief, just not lasting. I am seriously considering taking a leave of absence from my job to save my job."

• Sha...
• March 14, 2016

"Had two infusions of rituximab in January 2016. Some relief was on Enbrel for 9 years. It was fantastic, but stopped working. Unfortunately, I have now got atrial fibrillation from rituximab. Don't know where to go from here. Have had RH since childhood."

• Zoo...
• Taken for 2 to 5 years
• March 29, 2020

"Have had RA for 33 years. The doctors I have seen are helpful, giving various drugs over the years to combat pain. Received my first Rituxan infusion in 2015. The pain relief was amazing. Was also taking prednisone (I love steroids) and methotrexate. Had to wean off prednisone (one of the hardest things to do) in 2018 and have not had another Rituxan infusion since mid-2019. I dropped 25 lbs, am eating extremely healthy, remain on methotrexate every 9 days, and feel blessed as I have no swelling."

• Tum...
• December 22, 2016

"It does seem to improve the pains in the joints, but not that much in my lower back. My biggest issue with Mabthera is the side effects! The chills are so uncomfortable, it's unbearable! I can't stand feeling cold right into the bones! I don't know what to do 'cause I can't even work because I get so, so cold while I sweat!"

• Mar...
• Taken for 5 to 10 years
• September 3, 2019

"Rituxan was prescribed for my RA about 8-10 years ago and allowed me to continue working full time, putting the max away for retirement. Some fatigue occasionally, but no joint pain. After retirement, the combination of allergy to a new huge Maine Coon cat causing chronic congestion and the suppression of my autoimmune system by years of Rituxan led to repeated chest, ear, and sinus infections. After many tests, allergy shots, and several consultations with specialists, the Rituxan was discontinued. Now (2 years later) no more infections, but the RA is up and raging again. New hand and finger damage, as well as bunions and flares on toes that had never occurred before. My doctor is waiting for a fifth Simponi infusion in 2-3 weeks before moving on to another drug. Simponi has done nothing. What is there for me to take at this point?"

• Sca...
• Taken for less than 1 month
• May 24, 2023

"I had a real fear of trying this but had no choice in the end as I could barely walk. I just had it yesterday and had no reaction to the meds. The nurses were wonderful - I had obs every 15 mins and felt really assured by the staff. Today I got up for the first time in five years; my feet hit the floor without me nearly passing out. I know it’s early days but I feel great today, a little flushed in my face but no other symptoms. So don’t avoid it out of fear, DO IT."

• Bra...
• Taken for 6 months to 1 year
• November 17, 2021

"My mum has had two sets of infusion. The doctor consultant gave it a thumbs up and said this is the last resort, so we had no choice but to give it a try. After six months, when my mum eats her food, it is straight back up again. She says it gets stuck, and with that sputum, she then feels unwell for days and refuses to eat as she fears it will happen again. Anyone with similar side effects can you help and show us the right direction as the consultant hasn’t even rang us back as we booked a nurse and doctor callback. Not happy and worried so much."

• Jac...
• Taken for 1 to 6 months
• May 24, 2022

"Never felt so much in pain after 2 infusions of rituximab. Had all the treatments previously, and Enbrel was the best but stopped being effective. I’m now 6 weeks in, and my ESR has quadrupled, my CRP levels have doubled. I’m now waking every morning in severe pain with joints. Always been active but getting weaker. Consultant thinks I may have contracted COVID and not known, but I’m not so sure. Wish right now I hadn’t touched this drug as I’ve gone backwards. I know I am only 6 weeks in, but I’m afraid this will not now improve. Now got to have further steroids to try and help me. Has anyone else had a similar outcome?"

• Pin...
• Taken for less than 1 month
• November 28, 2021

"Had to stop Methotrexate in May because it caused breathlessness, and after many tests, was told it was lung scarring. Was not on any treatment for six months, and my RA was totally unmanageable. I had my first Rituximab infusion two weeks ago, and I am in more pain now than I was before. I’m just hoping that it’s early days and will kick in soon."