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User Reviews for Actemra to treat Rheumatoid Arthritis

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Actemra Rating Summary

User Ratings
10
26% (6)
9
13% (3)
8
9% (2)
7
17% (4)
6
0% (0)
5
9% (2)
4
4% (1)
3
4% (1)
2
0% (0)
1
17% (4)
6.6/10 Average Rating
23 ratings from 26 user reviews

Compare all 306 medications used in the treatment of Rheumatoid Arthritis.

Reviews for Actemra

Loor · Taken for less than 1 month August 17, 2020

“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”

1 / 10
Bobby · Taken for 1 to 6 months March 11, 2020

“Nothing seemed to work until my specialist put me on Actemra. Has been a God-send. All my swelling and pain is gone.”

10 / 10
Tmc · Taken for less than 1 month November 29, 2019

“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!”

1 / 10
DHS · Taken for less than 1 month November 21, 2019

“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.”

1 / 10
Bo October 13, 2019

“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.”

8 / 10
Anonymous September 16, 2019

“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?”

1 / 10
Becca · Taken for 1 to 6 months August 18, 2019

“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.”

7 / 10
doc · Taken for 6 months to 1 year December 31, 2018

“Did me no good and stopped the medication ”

Juls March 13, 2018

“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.”

5 / 10
Anonymous · Taken for 1 to 6 months January 8, 2018

“ I told my doctor to take me off this drug after I found out there was a class action law suit developing after several deaths”

Sher7777777777 · Taken for 1 to 2 years January 7, 2018

“Helped greatly but still suffered terrible fatigue and pain along with upset stomach and weight gain”

7 / 10
ColoradoRAFighter · Taken for 6 months to 1 year December 25, 2017

“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.”

3 / 10
JFSublett · Taken for 1 to 2 years November 8, 2017

“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.”

5 / 10
Snow99 · Taken for 1 to 2 years October 20, 2017

“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.”

treeod · Taken for 2 to 5 years May 16, 2017

“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.”

8 / 10
Suzannemari · Taken for 5 to 10 years April 18, 2017

“The only drug that works for me”

10 / 10
Dwereley March 3, 2017

“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.”

7 / 10
ColoradoRAFighter · Taken for 1 to 6 months October 18, 2016

“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.”

10 / 10
Suzi Q · Taken for 10 years or more October 6, 2016

“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.”

10 / 10
Mus763 April 25, 2016

“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.”

4 / 10
PSF314 January 28, 2016

“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.”

9 / 10
ItsmeWayne · Taken for 1 to 2 years March 26, 2015

“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.”

10 / 10
wonderful1 · Taken for 2 to 5 years June 16, 2014

“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.”

7 / 10
chezalsue January 10, 2014

“I have had 3 infusions. My ESR have gone from 33 down to 8 & my CRP has gone from 17.9 down to 0.7. This stuff rocks.”

10 / 10
JoyfulJo aged 43 May 30, 2013

“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!”

9 / 10

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