User Reviews for Tocilizumab to treat Rheumatoid Arthritis
Brand names: Actemra
Tocilizumab has an average rating of 6.8 out of 10 from a total of 29 ratings for the treatment of Rheumatoid Arthritis. 48% of reviewers reported a positive experience, while 17% reported a negative experience.
Reviews for Tocilizumab
Actemra (tocilizumab) "I was diagnosed with rheumatoid arthritis in 2008. I was put on methotrexate almost immediately. My first stab at a TNF inhibitor went well for about a year. Then, there were a couple of tries with different meds (including the dreaded prednisone for flares). My PA thought that we could "do better".....so, I researched and she researched....together, we came up with Actemra. The stiffness in the morning is GONE! I haven't flared in over a year! I'm SO lucky to have found Actemra. The only thing that kind of bugs me, is that the week before my next infusion is due, I get a little stiff and more tired than usual."
Actemra (tocilizumab) "I have received 3 months of IV Infusion of Actemra because my Dr promised me this would be the "ONE" after trying so many. I have needed prednisone everyday going on 10 months! Doses as high as 20mg for months! Now have the dreaded side effects from all that prednisone in my body! What's next? Why bother putting all this poisonous biologicals in my body if none of them work? Tried some that work on TNF cells and Actemra that works on IL-6 cells. Even tried one that work on JAK cells. I have an Appointment for my 4th month Actemra infusion this Wednesday. I will be letting Dr know this will be the LAST one if nothing still does not change! No RA drug is helping relieve this every single day nightmare flare! The only thing that does work is the prednisone!! But cannot be on that forever either. What do I do?"
Actemra (tocilizumab) "Previous experience with other medicines that were ineffective were Enbrel and Humira. I was on methotrexate for 5 years but was taken off as it caused an enlarged liver. I've been on tocilizumab now for 7 months. Its fantastic! No stiffness and no flares! Took about 8 weeks to kick in fully. I've suffered a few side effects including sores on my hands and feet, bleeding gums and upper respiratory tract infection. Side effects are subsiding now though and seem insignificant due to how good my rheumatoid arthritis has been since on tocilizumab. I feel fantastic!"
Frequently asked questions
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Actemra (tocilizumab) "I had tried Orencia, which worked for three months and then quit. Next, I was on Rituximab, but after a year and a half, my rheumatologist and myself decided to switch, as it was not helping enough. My rheumatologist suggested Actemra and life has come back to me! I have only been on it a year and a half, but during this time, I have felt so much better. My C-reactive protein went from 38 to 1 and my SED rate has gone from 18 to 0.1. Interestingly, the IL-6 protein was my culprit and Actemra targets that protein. With todays Vectra-DA blood test, studies are finding which biologic medications can work the best for you. Rheumatologists are also finding the sooner they turn down your symptoms, the easier it is to control inflammation caused by autoimmune disease."
Actemra (tocilizumab) "It put me in the hospital for 9 days, 2 weeks after taking infusion. My lower right leg swelled and I started having blisters pop up all over, like softball sized! They finally figured it out, it was a chemical eruption from actemra infusion! Could have lost my leg! Worst experience ever! 2 weeks I'm I'm still bedridden cannot walk on it and blisters are still forming. This medication is nothing to mess around with! Wish I could post a picture with this message!"
Actemra (tocilizumab) "I previously gave this drug a 10, but after the 11th month, I had a heart attack and a week after that two stomach perforations causing me to vomit blood. Although Actemra helped my RA, my doctor immediately discontinued the drug after the heart attack. After the upper GI bleed, my doctor permanently discontinued Actemra due to the serious nature of the side effects. I think the drug needs more study and trials to determine if it is safe. I would not take it again."
Actemra (tocilizumab) "I was diagnosed with RA over 15 years ago. At my worst I sat on the couch with my pain pills in one hand, and the TV remote in the other. I was unable to stand or walk without assistance. I was approved as a patient for the clinical trials for Actemra, and for me this was a life changer, a total reversal of what my life had become. I finished raising my two sons, work full time, and even earned my degree in the last ten years since taking Actemra. While I still have some flares a times, my overall life has improved 100%. My SED rate dropped from 130's to under 5, the only thing I still struggle with is the insomnia and fatigue. I have been truly lucky as I have not experienced any side affects in the 10 years I have been on Actemra."
Actemra (tocilizumab) "I have very active rheumatoid arthritis, I started Actemra in May 2010, it took 8 or 9 months for it to start working. March 2014, I had a low white blood count, called Neutropenia. Stopped Actemra for 3 months, now I'm on a 1/2 a dose. Tried many other meds over the years, but nothing worked like Actemra for me. I hope I can keep taking it. Time will tell. So many side effects to look out for. 55 year old female on Medicare."
Actemra (tocilizumab) "This is the 3rd treatment for RA i have tried. The 1st was Remicade which helped considerably but I had an allergic reaction so I couldn't use anymore. The 2nd was Orencia which didn't have an impact at all. The Actemra is working but I'm experiencing all sorts of side effects like increase in cholesterol and blood pressure as well as blisters and boils over my body. Kind of scary as it's only been 2 treatments."
Actemra (tocilizumab) "I have had RA for nine years that was managed well with Plaquenil for eight and it stopped working. I tried Enbrel with Methotrexate and Prednisone for nine months. Vectra-DA test showed high RA disease activity with Interleukin 6 protein as main culprit. Discontinued Enbrel and began Actemra self injections. Two days after sixth dose, I woke nearly pain free. It has continued to improve the last several weeks, as well as reduced stiffness and fatigue. Only side effect has been an occasional mild headache. For me, the Vectra test and Actemra have been game changers in the management and treatment of my disease. I could not be more pleased."
Actemra (tocilizumab) "I started Roactemra (tocilizumab brand in the UK) 4 months ago for RA, previously been on Humira and enbrel which did not work enough. I also tried metotextrate but can't seem to tolerate it, so then I got roactemra. Started to work after 3rd injection and has been working very well to control my RA. However I now experience a feeling of not getting enough air, get very fatigued and feel weak, also some dizziness and headache approx 2-3 days after injection. So IDK if I can keep on taking this drug. I'm not even sure if it is Roactemra causing this but it I might have to go off medication to find out, since I can't really function in my daily life - meaning I have no stiffness or joint pain, but can't breathe properly so I cant enjoy it."
Actemra (tocilizumab) "Actemra eases my RA symptoms for approximately 2.5 weeks from a 9 to a 6 on a scale of 10 for pain, stiffness and fatigue. The week prior to an infusion it creeps back in more and more, day by day and takes a few days to get it back to a 6 after the infusion. I use Celebrex and Advil to deal with it, but my Rheumatologist has recently started me back on methotrexate with the Actemra infusions. I have taken almost every drug for this disease over a 26 year period. None of them have put me in a remission and the disease has progressed despite taking them all compliantly."
Actemra (tocilizumab) "Started taking Actemra 5 months ago for RA after trying 4 other biologics. The Actemra had helped dramatically with lowering my CRP levels (which have been incredibly high for over 2 years) however, I now have intense stiffness and joint pain which never seems to dissipate. The pain in my feet has increased to a point where I can hardly walk. Additionally, I've developed iron, vitamin, inflammation, aplastic, & hemolytic anemia. I have decided to stop this drug and switch back to one of my previous biologics which didn't help with the inflammation but, at least my pain wasn't so extreme and I wasn't dealing with the anemia."
Actemra (tocilizumab) "I did one Actemra injection. After injection I could not walk straight and was so tired. Thought it was side effect. Woke up with swollen face and eyes! Wheezing in my chest. Called my doctor he said prednisone and Benadryl. It’s been 4 days and I am still so tired and nauseous"
Actemra (tocilizumab) "I have had RA for over 30 yrs. It was one of the most efficient ones I have taken although I developed septic shock within the last 4 months from a local wound and the medication had reduced my immune system to the point of this terrifying experience."
Actemra (tocilizumab) "I have been on Actemera for almost 2 years. Before taking it my blood levels were all over the place and was physically drained. Since then receiving infusions every 5 wks. and have had good results and blood work is MUCH improved! I have been lucky to NOT experience the side efforts I've read about. I have also heard from my Dr. that 30% of patients can develop a resistance to the drug. I am doing well but my dr would like me to do better. Might try switching me off in time. I initially I have tried prednisone and embryle with no results. We shall see."
Actemra (tocilizumab) "I took the first dose of Actemra and felt a little dizzy but that did not last long. My stiffness was reduced and for the first time in two years felt like myself again. The only problem is that my lip was slightly swollen but went away in about two days. The medicine last for about 4-5 days then I started having severe pain in my joints especially my elbows and shoulders. I had to take pain medication which did not help much. Overall I love this medication and I can't wait for my weekly injection."
Actemra (tocilizumab) "I was diagnosed with RA in 1987 after giving birth. Since then I have tried almost every drug available and my RA continues to ravage my joints. Actemra is working pretty well but I have had to go off of it for a time because my white blood count dropped too low. I've been back on it for almost a year, I had to reduce my methotrexate in order to keep the WBC up and take 3mg of folic acid daily and 1mg of prednisone with frequent use of meloxicam. I am on Medicare. I can not get assistance for the drug that worked well, Simponi. J&J did not offer assistance and I could not afford the high copay. The best thing about Actemra is the compassionate patient assistance team. They are always caring and helpful when I call them."
Actemra (tocilizumab) "Worst biologic experience yet! This is a weekly injection and I had severe nausea on this. My rheumatologist thinks it was more of an interaction on this and my methotrexate (although MTX has caused me any issues in the nearly 3 years I’ve been doing those injections). This was like horrible morning sickness all day everyday—I lost 6 lbs the first week I was on Actemra due to nausea. Week 3, I woke up the day I was to do injection #3 (which I do at bedtime) and my face was puffy, my legs were COMPLETELY swollen to the point where it was difficult to bend without discomfort at hip and knees, my belly was swollen almost to the point of rigidity. My doctor wanted to see me rather than send me to the ER and turns out this is a rare side effect. Stopping immediately and had to go on diuretics to help reduce swelling. Risk of stomach and bowel rupture was a concern since I’ve already had sepsis after an undetected appendix rupture several years ago."
Actemra (tocilizumab) "I had some positive experience from receiving Actemra . However about 1 year ago I suddenly developed pulmonary hypertension and RT sided heart failure, suddenly developed severe dyspnea, chest pain, chest & throat pressure, unable to lay flat or symptoms worsened. I was referred to a cardiologist who performed blood work. The BNP result being 982, a chemical stress test, a right sided heart cath that showed high pressure in the right side of the heart. I was referred to Dr who specializes in pulmonary HTN. After about 6 months he ordered repeat testing, Where we discovered the pulmonary HTN had subsided. Normal heart pressures and BNP decreased to approximately 200. No other RA meds taken since."
Actemra (tocilizumab) "Actemra has worked very well for my RA - the first 18 months I was self injecting the 162 ml shots, and all was well. I often would go three weeks between shots rather than two. I just was switched a few months ago to the infusion once a month due to a different insurance. I now have hemolytic anemia, which is a first for me in a 42 year case of seropositive RA. So, will find out what the doc says soon, and may need to change amounts of the infusion, or switch to something else. Since I REALLY dislike the once a month infusion for an hour, I would love to find something else that doesn't require that."
Actemra (tocilizumab) "I am 39 years old and have been diagnosed with juvenile RA at the age of 15. Now my diagnose is seropositive RA. I have been on all existing meds but my problem is that they work for some time and then stop working completely. I had to wait for years to be put on biological therapy. Now, I have been taking Actemra for 1,5 year and it worked I would say between 4th and 9th month. The last six months I see that it's no more effective for me. I am again in a lots of pain and I can't function normally. I said it to my rheumatologist and she gave me Arcoxia as a NSAID to be taken and maybe cease the pain. It's not helping at all, so she said that we do a switch to another drug. Hope it would work better for me this time."
Actemra (tocilizumab) "Have had good experience on this drug by infusion once a month . Has given my back the quality of life. Less pain and hardly any inflammation. Energy level is good too. Side effects are high blood pressure which is controlled by meds. Some itchiness now and then"
"I was born with arthritis diagnosed at 10 months old. I have tried everything and I mean everything I'm now 34 and gave tocilizumab a go. One infusion per month . I had 3 months worth, then had a seizure in my sleep was sleeping for 18 hours before wakening and realising what had happened. I have now been diagnosed with epilepsy and have seizures often .I'm not saying it's connected but if anyone has similar experiences would be good to hear"
"While I did find that the medicine moderately relieved most of my RA symptoms, I found that I developed an absurd amount of mouth ulcers/ canker sores. I would get them everywhere in my mouth, including 3 nickel sized cankers on my soft palate which made it very difficult to eat. I finially had to stop taking the medication due to the cankers."
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
Learn more about Rheumatoid Arthritis
- Arthritis: What You Need to Know
- Rheumatoid Arthritis: Symptoms, Diagnosis & Treatment Options
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