Orencia for Rheumatoid Arthritis User Reviews (Page 2)

• Dai...
• Taken for 6 months to 1 year
• February 6, 2020

"Worked great for 9 months. (moderate-severe with positive RA factor) Went off this for around three weeks due to a mix-up with co-pay. Now, two straight weeks of stomach rumbling and diarrhea. Probiotics, Pepto-Bismol, nothing is helping. This is the only RA med that has worked for me, so I really hope my doctor can get me over this. I am on a copay plan through an assistance fund, and they pay what Medicare/Anthem doesn't cover, $1500/month. Before Orencia, I was unable to function, so I'm very thankful because it gave me some of my life back."

• Anonymous
• September 3, 2009

"This medication has been a lifesaver for me. My 22-month-old granddaughter and her mother live with me and my husband. It is a job keeping up with her, and without Orencia, I can't even walk, my pain is so severe. Thank you, Orencia."

• LKi...
• Taken for 1 to 6 months
• June 29, 2023

"I have rheumatoid arthritis and mixed connective tissue disease. I was on methotrexate and prednisone for approximately 8 years. The methotrexate stopped working, and I frequently had severe flare-ups that caused me to increase prednisone to alleviate the severe swelling, stiffness, and pain. I recently tried Humira injections. They did not work for me. I was tested to see if I would respond to other TNF inhibitors and learned I had less than a ten percent chance that any TNF inhibitor drugs would help. After reviewing various other options offered by my doctor, I decided to give Orencia a try. I have completed the 3 loading dose infusions, plus one monthly dose. I am pleased to say, I feel 80 percent better. The stiffness and severe pain are gone. I can make fists again. Before, I couldn't close my hands. My energy is better, and I'm sleeping more comfortably because I'm not feeling all the pressure point pain. I'm still on the 5 mg of prednisone, but I plan to stop taking it."

• Jul...
• Taken for 1 to 6 months
• March 20, 2019

"I have ever been on abatacept, and after 13 weeks, it hasn't had any effect. I was on rituximab with no result either. Am I a lost cause? So, doctors are taking me off it and tackling pain control with patches. Has anyone else had failures?"

• Anonymous
• Taken for 5 to 10 years
• January 11, 2024

"I am a 78-year-old male who was diagnosed with rheumatoid arthritis in 2007. My rheumatologist put me on Enbrel. I almost died from an infection after a short while on this drug. I was then put on methotrexate and was doing fine. Orencia infusions were also added to help with the inflammation. Being on the methotrexate for a few years started to really upset my gut. I am now on a once-a-month infusion with Orencia, and I love the way this drug is helping me function in all my everyday life activities."

• 176...
• Taken for 1 to 6 months
• May 25, 2023

"Ended up being a nightmare drug. First RA drug I’ve tried that had such detrimental psychological side effects that I hope go away eventually after stopping. I had my anxiety and depression under control for 10 years, was at peace in my mind, and days felt bright minus the fatigue that comes with RA. Only drug I’m on currently. Since starting it months ago, I’m in constant terror and a major depressive episode that’s wrecked havoc on my life. Also caused debilitating lower back and shoulder/neck pain. I had rapid weight gain, even as someone who normally has difficulty gaining weight. It did work for joint pain and skin-related stuff due to my condition, usually, the effects would be the most for the first couple of days after injection, though - not worth it. I hope this can be reversed once out of the system, which takes weeks…"

• A R...
• Taken for less than 1 month
• April 18, 2016

"Diagnosed 3 years ago with RA in all major joints except the right hip, which is severe Osteoarthritis. I take Plaquenil and have tried Methotrexate, Gabapentin, Meloxicam, and Arava. Had major side effects with each one. My Dr. decided to try a biologic. My first self-injection of Enbrel caused an anaphylactic reaction, almost killing me. I now carry an EpiPen. I was scared but hopeful that Orencia would work. The first injection I literally kept the EpiPen in my hand. Two hours after the first dose, all 10 fingers turned a very dark blue-black color, as did my feet. My legs were a solid grey-blue color. Second injection, same thing. Orencia was stopped. Two months later, I am still blue. NEVER AGAIN!!!"

• Jay...
• Taken for 1 to 6 months
• January 7, 2021

"I was on Enbrel for over 15 years for RA. Shortly after I started on it, I told my rheumatologist it was a miracle drug. I still had flares, but the severe pain I had felt every day was pretty much gone. Then, after so many years, the pain started returning. My current rheumatologist switched me to Humira. After a month, it seemed to be helping. But I was having nausea and a continuous headache with occasional dizziness. It was so bad I asked my rheumatologist to switch me to something else. She then put me on Orencia. I've been on it for 6 weeks, but the pain I had before going on Humira has returned. And I also have nasal congestion 24/7. I'll give the Orencia a few more weeks, until my next appointment with my rheumatologist, and if the pain and congestion aren't any better, I'll see what she wants to do. As a side note, I've also been taking methotrexate for 15 years."

• RA ...
• Taken for less than 1 month
• April 11, 2015

"Got an infusion of Orencia on a Tuesday for worsening RA symptoms. Wednesday, I had a severe headache that basically incapacitated me. Thursday morning, I woke up with the same headache, sensitivity to light and sound, and a stiff neck. I was unable to stand up without vomiting. An ED doctor did a lumbar puncture and told me I had viral meningitis. That experience has made me reluctant to try another biologic."

• Nic...
• March 18, 2015

"I have moderate to severe RA. Diagnosed 1.5 years ago. Initially on Prednisone and Methotrexate; later added Remicade. Side effects were severe with fevers of 'unexplained origin,' night sweats, lethargy, and dizziness. Swelling of hand knuckles and ankle joint unchanged. Consulting doctor at Johns Hopkins suggested Orencia plus Plaquenil. I had already stopped taking the other meds. The benefit of Orencia kicked in after 4 months of infusion application. After 8 months, I am now on the second month of weekly self-injection. Swelling of the ankle greatly reduced. Right hand knuckle swelling somewhat reduced, but still evident with accompanying stiffness. I have never experienced significant pain with RA, but MRIs show joint erosion in hands and ankle."

• Hel...
• Taken for 2 to 5 years
• October 10, 2018

"I took this medication for 2 years! 2 years my rheumatologist forced me to stay on this nothing medication with obvious continuous flare and damage. I think 1 good year of giving a medication a go is sufficient, but this useless rheumatologist refused to try something else. In the meantime, my hands have obvious irreversible damage, swollen, hurt, and I require pain pills to survive. This medication is useless."

• Kea...
• Taken for 1 to 6 months
• June 20, 2017

"I've been doing the infusion for three months now. It hasn't improved any of my symptoms at all. Day of infusion, I get severe low back/hip pain, and I'm exhausted. The two days following, I sleep a lot and feel awful."

• Jul...
• Taken for 2 to 5 years
• December 28, 2020

"I have been in abatacept for around two years, but even though inflammatory markers are normal, I still feel pain all over, like a flare. I also have other things that are wrong with me. My white cells and platelets were above normal last time, which concerns me as I had a blood clot 10 years ago in my lung. I have a lot of pain all over, and I haven't a clue what it could be. Is it possible to have normal inflammatory markers and still be hurting? Thanks."

• Jan...
• Taken for 10 years or more
• May 18, 2023

"I have been taking Orencia since it first became available. It was effective at controlling my disease within the first few months. I used IV Orencia for the first few years, and after it became approved as SubQ, I've been giving myself shots weekly. It continues to work effectively at controlling my disease, and 2023 marks my 18th year using Orencia. I had an increase in skin cancer (basal cell carcinoma) at first, but I also have fair skin, freckles, and red hair. I continue to see a dermatologist regularly, but my rate of skin cancer has leveled out and I might have 1 spot removed every year or two. That is the only side effect I have seen, but again, it is probably due in part to my fair complexion and age."

• emi...
• Taken for 1 to 2 years
• December 12, 2014

"Severe back pain and also in the neck, shoulders, and arms started after being on Abatacept for about 3 months. More muscular pain than bone pain. Looking to come off it as it's becoming problematic. I've been on 4 other biologic medicines, and this was the most effective in getting flare-ups under control."

• arm...
• July 13, 2010

"I am on my 5th month of treatment and have seen some improvement in overall pain/discomfort, but I still continue to have issues. I also have extreme fatigue the day after treatment. My doctor just increased my dose to the maximum to see if that works. I must take medication to sleep comfortably and medication to stay awake during the day. These medications interact. I supposedly have a mild case of rheumatoid arthritis and am still waiting to feel normal."

• Sta...
• Taken for 1 to 6 months
• January 9, 2023

"I was encouraged to take Orencia by my rheumatologist after I had been experiencing vertigo and a racing heart from Humira. I was thrilled to learn I would only need one injection per month. After my 6th month on Orencia, I’m pretty much back to when I was first diagnosed in 2005. My joints feel like they are on fire, and I can’t move. I also have a terrible racing heart that keeps me awake with some serious trouble taking deep breaths. I’ve had zero relief while taking this medicine, besides maybe a few days right after I take the shot. I suffer for 20-25 days a month. Not good. I was told now to try Rinvoq, but after reading reviews on it, I don’t plan on trying it. I was taking Enbrel for 14 years prior but was taken off it as I have severe erosion in my bones and holes in my joints. I hope I can find something that works for my pain."

• Dam...
• Taken for 1 to 6 months
• December 15, 2022

"Orencia infusions almost finished me! I ended up in the hospital (ended up in there twice before I figured it out) for the first time in my life after receiving these infusions. My doctors never did figure it out and blamed the drastic increase in my blood pressure on my not being careful enough with my diet. My diet is very restricted, so strict it is almost boring! Because of my professional background, I keep daily notes, and it was in reviewing my notes that I finally made the connection between the date I started the Orencia infusions and the date the blood pressure problems started. The infusions were immediately stopped, however, my heart had already been damaged, and I will have to live with the discomfort and how these infusions have changed my life. It also did nothing to help my rheumatoid arthritis. The stress of everything I went through with the Orencia made my RA worse. I take a low dose of prednisone, which is much less harmful."

• Dhj...
• Taken for 1 to 6 months
• December 7, 2022

"I, too, have developed skin rashes and canker sores after six months of IV Orencia. I have requested a break to see if these are side effects. During the first treatments, I was feeling better with no flares but then began getting rashes and the canker sores. I have been through the mill looking for answers, and Thursday I have an appointment with a skin and cancer doctor. I am not sure what is my answer, but living with RA or the side effects is a toss-up, as both are debilitating."

• Pol...
• July 8, 2021

"Severe RA became a part of my life 37 years ago, before the biologics were developed. Three weeks after Enbrel came on the market, I started taking it in combo with hydroxychloroquine, sulfasalazine, methotrexate, and NSAID. This combo worked for me for 17 years. It was a miracle. Then Enbrel's effectiveness waned. I switched to Humira for about 8 months. Not effective. My MD said I had probably developed autoantibodies to TNF alpha meds. I took Xeljanz, which did not help either. Then I started injectable Orencia. After 3 months, I was in a massive flare-up. I switched MDs and started Prednisone and IV Orencia 750/mo. Continued with hydroxychloroquine, MTX, sulfasalazine, and NSAIDs. The flare-up resolved in 6 months. I had to stop MTX last year due to severe crashing tinnitus. Continued the combo for 2 years. Now the IV Orencia is not available to me on Maui, so I am back on injectable Orencia 125 mg/wk. Seems to be holding me. Thank goodness for Orencia."

• Rua...
• May 10, 2021

"My Vectra score came back at 55 (high disease activity), and it was time to figure out a new course of meds. Methotrexate injections didn't help with the pain and thinned my hair. Next up, biologics. Enbrel was a no-go due to the possibility of heart failure, and I was already experiencing high cardiac output. My first Orencia infusion was 2/11/2021. I experienced really bad headaches, lower blood pressure, and extreme fatigue. The headaches and lower blood pressure subsided a little. My rheumatologist and the IV nurse said to stay with it because it does take time. After the fourth infusion, I began experiencing head and facial tingling, causing my eye to freeze for a few seconds then stop. Tingling also in my left arm, dizziness, sore throat, and stuffy nose. My rheumatologist told me to stop the medication and offered Xeljanz. *long sigh* I really don't want to go on this medication tour and was really hoping Orencia would have worked. I heard so many good things from people who benefited from it. Let's see what's next."

• Aas...
• October 16, 2017

"I had the worst experience with this Orencia medicine. I kept waiting for the six months that they said it takes to work. In the process, I got worse than ever. It not only didn't work but made me worse. I was so mad that I waited so long in vain. I will never try another medication that supposedly takes that long to work."

• Les...
• Taken for 5 to 10 years
• May 2, 2024

"I was on Orencia from early 2016 to around 3 months ago. My body acclimated to it and it stopped working, so now I am on another drug. Orencia stopped my inflammation and flare-ups (I took it by infusion) and really worked well for a long time. When it stopped working, my body presented a few indicating symptoms that I would have noticed sooner if I had not been so happy with this drug. It is not a 'forever drug,' however, and is very expensive."

• Sti...
• Taken for 1 to 6 months
• November 14, 2022

"These infusions put me in the hospital twice (for the first time in my life!) with high blood pressure and damaged my heart. I had never had a blood pressure problem, and it was because of the daily notes I keep that I finally made the connection between the BP issues and the dates I had received the infusions, and the infusions were stopped. I have not had a blood pressure problem since, but the damage to my heart remains."

• mic...
• Taken for 6 months to 1 year
• September 3, 2021

"I liked this drug although it didn't stop my wrist pain. I had weekly injections and besides some issues with fatigue and diarrhea, it was pretty good. I was taking it with Plaquenil as well. My rheumatologist has switched me to Rinvoq, so we will have to see. Rinvoq has poor reviews, so I am a little scared."