ACTEMRA Reviews (TOCILIZUMAB)Average Rating: 2.8 (63 Ratings)Filter ResultsCompare ACTEMRA with similar:
Type: Biological Drug
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Results are sorted by Date added. Key to Ratings: 1=LOW (I would not recommend taking this medicine.) |
Charts & graphs: Drug Safety Information
| RATING | REASON | SIDE EFFECTS FOR ACTEMRA | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
| 5 | Rheumatoid arthritis | Headache nausea fatigued weakness post infusion | F | 37 | 1 years 400ml | 8/22/2019 | 2 | RA Sero-neg | Dry/itchy scalp, dry eyes, intense shoulder and upper arm pain. Extreme fatigue and possible depression. | Don’t know if this med is right for me. 5th med in the 14mos since diagnosis. So frustrating. | F | 50 | 5 weeks Biweekly | 6/16/2019 | 4 | Rheumatoid arthritis | I'm just really tired for about 2 days after getting the infusion. I had a GI bleed and stopped treatment for 3 months and restarted again 2 months ago. They were unsure if the bleed was related to this medicine or not. | It has helped with the joint pain and swelling. I am also on Arava and Plaquenil. Hippie things continue to improve | F | 43 | 9 months | 4/18/2019 | 4 | Rheumatoid arthritis | I'm just really tired for about 2 days after getting the infusion. I had a GI bleed and stopped treatment for 3 months and restarted again 2 months ago. They were unsure if the bleed was related to this medicine or not. | It has helped with the joint pain and swelling. I am also on Arava and Plaquenil. Hippie things continue to improve | F | 43 | 9 months | 4/18/2019 | 5 | Adult Onset Still's Disease | In the begining I would get a mild headache and exhaustion. I have no side affects from this medication as of today | I know that Actemra helps to decrease my systemic chronic illness and allows me to exercise in order to maintain my weight, get plenty of sleep, and provides the benefit for my whole being to be much healthier. | F | 55 | 5 years 748 1X M | 6/19/2018 | 4 | Rheumatoid | Tired, toenails splitting, rash on top of hands | It hasn’t given me pustular psoriasis on hands & feet. Not as strong as Humira or Enbrel. | F | 59 | 2 years 162mg 1x w | 3/17/2018 | 5 | Rheumatoid Disease | No real noticeable side effects thankfully compared to what some others have described. I have been noticeably more depressed than usual (even suicidal at times) but am taking an antidepressant to overcome that. I do notice that I am more tired than usual the day after I do my self-administered weekly injections. | Actemra has given me the second chance at life that I truly started to think I’d never have after failing on Methotrexate, Plaquenil, Sulfasalazine, Arava & Humira. My RA is sero-positive sudden onset (overnight!) - the worst as far as prognosis goes. It affected every joint in my body and I was mostly bed-ridden for 18 months while they tried every other drug first. The doctors said the best I could ever hope for was to get back 70% mobility. Well I’ve just come back from 2 days skiing, went rock climbing with my son a month ago, get on the rowing machine for an hour at a time and can now do everything I used to do that I truly thought I’d never be able to do again! I get scared if possible dangers of this drug but for me I’ll take quality of life over longevity any day! Thank God for Actemra! My biggest fear is that it will stop working and I’d go back to the way I was before! | F | 49 | 13 months .9ml inj | 3/13/2018 | 5 | Rheumatoid Disease | Depression. Nothing else like some others have described apart from being more depressed than usual (even suicidal at times) but I am taking an antidepressant to overcome that. I do notice that I am more tired than usual the day after I do my self-administered weekly injections. | I noticed it start to work after 24 hours and within a month or two all my bloods were back to normal and I very rarely get any pain at all apart from the odd “niggle” if I push myself too much. Actemra has given me the second chance at life that I truly started to think I’d never have after failing on Methotrexate, Plaquenil, Sulfasalazine, Arava & Humira. My RA is sero-positive sudden onset (overnight!) - the worst as far as prognosis goes. It affected every joint in my body and I was mostly bed-ridden for 18 months while they tried every other drug first. The doctors said the best I could ever hope for was to get back 70% mobility. Well I’ve just come back from 2 days skiing, went rock climbing with my son a month ago, get on the rowing machine for an hour at a time and can now do everything I used to do that I truly thought I’d never be able to do again! I get scared of the possible dangers of this drug but for me I’ll take quality of life over longevity any day! Thank God for Actemra! My biggest fear is that it will stop working and I’d go back to the way I was before! | F | 49 | 13 months .9ml inj | 3/13/2018 | 1 | RA-Severe-Seropositive | Immediately after first injection felt like I had sharp knives in EVERY single joint! All my joints are effected and painful, however it got more intense and extremely more painful w/med! Also developed RA of the rib cage which was one of worst pains because every breath hurt. BAD headache at least first few days after (at home) bi-weekly injection. Started retaining water and blood pressure went up, to the point I am now on 2 diff BP meds!😡Bad Taste in mouth days after injection. Excessive hair loss and weight gain. Absolutely ZERO RA “relief” or benefit. Labs (anti-ccp, ESR) all increased. Oh ya, lol, increased acne too! | This was NOT the med for me, and I was holding out so much hope it was as I am just getting worse and worse and running out of meds to try! So far failed, MTX, sulfasalazine, plaquenil, Enbrel, Humira, Xeljanz, and Actemra! :( Maybe will work better for someone else but didn’t for me, ALSO noteworthy Europe won’t “approve” this drug for patients. ?? | F | 38 | 5 months | 12/14/2017 | 2 | RA | Almost immediately after 1st injection I experienced intense joint pain in my hands, wrists, elbows, knees, ankles, feet and toes. I developed extreme joint pain in joints never previously affected. I could not use my hands hardly at all. I could barely walk. As I had high hopes this drug might work, I had a second injection which caused even more pain in my joints, including my neck as well as muscle/tissue pain in my arms and legs that I have never before experienced. The arm and leg aches are intense - especially at night, and along with the intense joint pain means I am unable to sleep. | This drug seems to have worked well for some, but I do not think it is the one for me. i will try one more injection, and if intense joint and muscle pain persists, I will stop the drug. Common sense would dictate that if the drug makes your symptoms far worse, it must not be right for you. My Rheumatologist tries to tell me it is just the disease progression, but that is actually insulting to my intelligence as I had no where near this kind of pain in my numerous joints and muscles until immediately after the Actemra injection. | F | 51 | 5 weeks 162mg 2X M | 9/6/2017 | 4 | Rheumatoid Arthritis | Sometimes nausea after the injection. So soreness next few days. Maybe some depression? | F | 34 | 2 years 162mg | 8/20/2017 | 5 | Neurosarcoidosis / systemic sarcoid | Stomach nausea, constantly breaking out in hot flashes. | I am taking Actemra now for almost 3 years Infusion every 3 weeks. Has been only drug to stabilize my disease. Thank God for Actemra | F | 49 | 3 years 400mg Infu | 8/9/2017 | 2 | Remicade/Enbrel MTX failure | Markedly increased swelling, pain. Stiffness in all joints. Chilling, extreme fatigue. Marked increase pain in feet to the point that it is difficult to walk. | I have continued infusions of ACTEMRA under the suggestion of my physician. However, my symptoms worsen. | F | 55 | 4 months 8mg/kg 1X M | 6/1/2017 | 2 | Rheumatoid arthritis | My pain and stiffness in my joints has worsened as well as my fatigue. In the morning my body is so stiff I can barely get out of bed . I used to have flares every so often and now my flares don't go away. | F | 55 | 6 months Infusion | 5/21/2017 | 3 | Rheumatoid arthritis | None while on infusions for 18mths but been on injections for 5/6wks and I am having horrific pain in feet for 4days after but after yesterdays injection I now have very severe pain/burning in feet and hands and I can't even hold a cup today Don't feel like having next weeks injection as this pain is awful | F | 18 months | 4/27/2017 | 1 | I have never experienced so much pain.My joints are swollen and I can barely walk.Far worse than before I started. | Horrific | F | 57 | 4 weeks | 3/27/2017 | 3 | moderate RA | fine on infusion day, then extreme nausea and wind day 1&2. Day 2 all joints seem to ache. | F | 44 | 2 days 800mg 1X M | 2/18/2017 | 2 | RA | I had all the signs of Sciatica | Click on this address, (below) spend some time on it. Find the reasons you are having pain in your joints. It could well be because Actemra has caused Sciatica in a number of people including ME. If this is the case with you, quit Actemra!! https://www.google.com/search?as_q=actemra&as_epq=sciatica&as_oq=&as_eq=&as_nlo=&as_nhi=&lr=&cr=&as_qdr=all&as_sitesearch=&as_occt=any&safe=images&as_filetype=&as_rights= | M | 68 | 1 years 40 1X day | 2/2/2017 | 1 | RA | headache, dry mouth, cracked bleeding lips, cold sores, horrific shoulder and upper arm muscle pain, bad taste in my mouth, constipation | at first I thought that it would just take time for this to get in my system and I would be fine, but as time goes on, I am getting worse and worse. I've gained weight, I have no energy and the pain in my shoulders and arms is killing me, I can't even get dressed now with out help! I feel like I am going crazy because I tell the doctor and they just give me more meds (Tylenol 3, gabapentin...) nothing works. prednisone used to help but not even that works anymore. as I type this, I am at work, and I just want to cry I hurt so badly. I want to call my doctor but I am afraid he will just think that I am a whiny baby. I am 59 years old and I feel like my life is just about over. does anyone else feel this way? | F | 59 | 3 months 162 MG/.9M 2X M | 1/30/2017 | 5 | RA | No side effects so far,swelling is down pain gone next step get off prednisone,lost 8 pounds | F | 46 | 6 weeks | 12/7/2016 |