Upadacitinib for Rheumatoid Arthritis User Reviews (Page 3)
Brand names: Rinvoq, Rinvoq LQ
Reviews for Upadacitinib
- Rob...
- Taken for 1 to 6 months
- October 21, 2021
"I have severe chronic RA and was diagnosed when I was 30 years old. I have suffered with this disease for 20 years. I'm amazed! I just can't believe the difference this medication has made. I've been on a 4-week trial and after 2 weeks, I have not had one flare. I can move my wrists freely and my knuckles and fingers are pain-free. So far, I haven't noticed any side effects. I am also taking methotrexate in conjunction with Rinvoq once a week. I find taking Rinvoq daily is a big chore and would like to have it in a weekly or monthly dose!"
- Liz...
- Taken for 1 to 2 years
- July 4, 2022
"I have RA and Ménière’s (inner ear problem). Rinvoq worsens my inner ear problem, causing increased vertigo. Stopped Rinvoq temporarily for another reason. Vertigo episodes disappeared! Restarted Rinvoq: vertigo returned a week later. Stopped the Rinvoq for 3 weeks again: vertigo disappeared. Restarted Rinvoq: vertigo returned. When I take Rinvoq every other day instead of daily, vertigo episodes are +/- one per month. When I take Rinvoq daily, vertigo episodes are 1 or 2 per day. Rinvoq exacerbates my inner ear problem, making Ménière’s more difficult to control, resulting in more frequent vertigo. Several reviews mention vertigo and dizziness on Rinvoq, but vertigo doesn’t show up in the official side effects list. If you’re having vertigo, spinning sensation, dizziness on Rinvoq, please post here, tell MD, and tell specialty pharmacy. They won’t list it as an uncommon side effect if they don’t know about it. They won’t know about it unless we tell them."
Frequently asked questions
- What are the most common skin conditions? (with photos)
- What are the new drugs for rheumatoid arthritis (RA)?
- What is the MOA and half-life for Rinvoq?
- jam...
- Taken for less than 1 month
- September 14, 2022
"I started this medicine after Enbrel and Humira failed me. Within a week of taking this medicine, I got shingles, rashes, mouth sores, awful stomach pain, back pain, and my heart was racing at 120 beats a minute. I tried to reason with my Dr, she said the benefits outweigh the risks. I say not, so I am quitting the med and hoping for the best."
- meg...
- Taken for 1 to 2 years
- August 19, 2021
"I have been on Rinvoq for over a year. I previously tried Xeljanz and Olumiant. I have had many problems with dizziness and vertigo. Has anyone else experienced these problems while on this class of drugs? I would appreciate any information on this debilitating problem. Thanks."
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Your review helps others make informed decisions.- Jen...
- Taken for 1 to 2 years
- January 4, 2024
"Two and a half years ago, I was diagnosed with RA. Over a little more than a year and a half ago, the doctor tried methotrexate, Humira (2 shots monthly), and Inflectra infusions (every 2 months). I would improve a bit early on (from bad pain and stiffness) after the treatments, then I’d fall apart. Flare-ups, allergic reactions, bad pain & sadness would creep in. Within 2 days of taking Rinvoq, I felt great! I’m sorry to read the other reviews, as my experience has been very positive. Any infections I’ve gotten can be explained - and stopping Rinvoq for a few days helps my immune system catch up. Knock on wood it keeps working for me! I respond well to taking Rinvoq every day! Thank you for inventing and investing in Rinvoq!!"
- Oli...
- Taken for 2 to 5 years
- September 6, 2022
"I started this medication 5 yrs after my RA diagnosis. Went through and failed all the others from methotrexate to Humira and Enbrel. I was a shell of my former self when I started Rinvoq. Much to my surprise, it worked immediately. With it came abdominal pain and gastric distress, several bouts of diverticulitis, UTI, and kidney infection. That being said, I went from immobile to mobile, which is a huge consideration. Due to the many infections, my rheumatologist recommended 3 x a week dosing, 15 mg. Much to my dismay, the infections continue. I was just off this med entirely for 6 weeks and returned due to the onset of pain and stiffness in my joints. I do plan on using half my prescribed dose from here on out. If infections persist, I'm gonna have to call it quits. There are side effects to antibiotics (Levofloxacin), such as spontaneous tendon rupture, that pale in comparison to my worst RA day. Do my best to eat right, stay in a normal weight range, and walk, and hope for the best."
- Dav...
- Taken for 2 to 5 years
- August 24, 2022
"Five years ago, I got diagnosed with rheumatoid arthritis. I was 32 years old, and it was crippling. Considering my second son was just born, it was not good timing. I tried every medicine. I felt like a guinea pig. Nothing really worked. My rheumatologist was getting a little desperate, and that scared me for sure. I tried all types of diets, the carnivore diet definitely worked the best, and getting rid of carbs was big. Some days, I still could barely walk. Rinvoq was amazing, I've been on it for about two years, and I'm 92% better. I can't say much about many side effects. I have an eczema sun rash, but nobody really knows if that's from the medicine. Small price to pay if it is. I wish I knew more diet stuff earlier. The best for me was the carnivore diet (no carbs), but I didn't really try the full vegan diet long enough to tell. In any case, diets really help, but they have to be strict! Overall, Rinvoq was the game changer. Hopefully, no long-term side effects."
- Rin...
- Taken for 1 to 2 years
- August 5, 2024
"Rinvoq, 15 mg daily, has been a miracle for my RA symptoms, which had not responded well or consistently to many others of the usual oral and/or injectable medications. Low-level disease activity now, and very thankful. Initially, I did not even register any negative side effects, however, over time-just over a year-I am experiencing weight gain, iron deficiency, and a mild drop in white blood cells. Doctor is monitoring this-query due to Rinvoq? I hope NOT!"
- Kch...
- Taken for 1 to 6 months
- July 6, 2023
"I have been on Rinvoq for 1 month. I had my labs drawn today and my results of my CBC are alarming! Low WBC, RBC, Platelets and more. I'm stopping this med and calling my Dr first thing in the morning."
- Anonymous
- Taken for 1 to 2 years
- July 1, 2022
"Been on Rinvoq for nearly two years. I started at 67 when I couldn't walk from bad rheumatoid arthritis. Both knees had cysts and shooting pain from a fall off my bike several years ago woke me up at night. Rinvoq worked miracles for me. Started gardening and cooking again. Only take every other day as I am about 120 lbs, 5 ft 6 inches tall. Also, as an elderly person, meds don't metabolize as quickly. However, I do stop taking it whenever I feel a scratchy throat or run down from cold symptoms. Also stop if I get a mouth sore from biting myself when chewing."
- Dar...
- February 28, 2022
"I am a 61-year-old woman. I was diagnosed with RA years ago. My specialist had me on so many meds, I even had to take injections. They didn't work, I was in so much pain. I had a hard time getting up in the morning and walking around. I have it in my hands, fingers, toes, ankles, and knees. I started seeing a new specialist, and he put me on Rinvoq. I have been on it for almost 2 years. I have been noticing I am always tired and sleep a lot. I don't know if this is because of the meds, or is it just me. I have been breathing deeper too, so is this normal or what? But I do not have any pain. I can walk again without pain."
- Not...
- Taken for less than 1 month
- December 3, 2021
"I have been taking this medicine for a week. My blood pressure has been uncontrollable, and I have been having headaches. I was diagnosed with juvenile RA and haven't had to take any medicine. I was trying it to see if it helps for occasional pain. I believe I will stop it and do more natural things. Don't like how I was feeling."
- Pet...
- Taken for 6 months to 1 year
- April 10, 2023
"Severe respiratory issues, shortness of breath, small skin sores all over my body, and fatigue. I've had severe rheumatoid arthritis for some 35 years now. I've been on pretty much every medication available, with some of them giving pretty severe reactions. In my case, Rinvoq has been one of the more difficult medications regarding the side effects I've experienced. Having said that, we're all different, what affects one may not cause the same issues with another."
- Stu...
- Taken for less than 1 month
- August 31, 2021
"I have psoriatic arthritis, just got off of one medication that kept me sick 3/4 of the time and prescribed Rinvoq. After reading all these comments, I have decided not to take this. I would rather suffer with my arthritis than subject myself to more sickness. The last 3 months on the other medication have been a living nightmare, and I don't want that again."
- Anonymous
- Taken for less than 1 month
- June 9, 2022
"Started Rinvoq 4-5 weeks ago, and the past 3 weeks I’ve had extreme cystic acne appear! It started on my scalp, then around my hairline, behind my ears on my neck. Now it’s all over my chest and my back. I’ve never had skin issues, and this is ruining my skin!"
- Tom...
- Taken for 2 to 5 years
- May 26, 2023
"I have been taking Rinvoq for a number of years to combat my arthritis. I have seen incremental reduction in pain levels and local swelling after a few years of 15 mg/day. I haven't experienced any serious side effects while taking this drug."
- Anonymous
- Taken for 1 to 6 months
- December 12, 2021
"I was diagnosed with RA in 2020. I was first put on hydroxychloroquine, then methotrexate, which did not work for me, then Rinvoq. I took Rinvoq for 3 months and started to feel the drug working well on the RA. I had less stiffness and pain, but between the third and fourth month, I started to feel my heart beating rapidly, like it was on a treadmill. I had to stop taking it, and now I have to see a cardiologist. The drug was working, but my heart could not tolerate it."
- Nor...
- Taken for less than 1 month
- May 12, 2023
"My doctor has recently asked me to start Rinvoq. I’ve had RA for 24 years and have been on Methotrexate, sulfasalazine, Plaquenil, Enbrel, Orencia, Kevzara, and Cimzia. I’ve had multiple foot surgeries to correct deformities. I’m so bad now I’m wondering if I can continue to drive a car. I can barely lace my shoes. I finally acquired a bad infection and have spent months on IV meds plus another surgery. I thought things couldn’t be much worse, but after reading the reports of all of these horrible side effects, I realize things could be MUCH worse. I’ll eat the cost of this drug this month, but I won’t take it. How does the FDA allow drugs like this to be released? How can it be effective when you pay for it in misery?"
- Pam...
- Taken for less than 1 month
- February 2, 2023
"I started Rinvoq 3 weeks ago, and it eased the pain right away. However, after taking it for a week, I felt fatigued and tired all the time, had low energy, and was irritable. Then my vision started getting bad, and I became overly hungry. After 2 weeks, I had enough and stopped taking the medication. I have been off the medication for almost a week now, and my vision is coming back."
- Anonymous
- May 3, 2020
"Has anyone tried this after Humira? I was on Humira for years and did great, but had to stop when I couldn't afford it because I was student teaching. Fast forward about 4 years later and wanted to get back on it... been on for a year but not seeing the same result after restarting... granted, I haven't always been able to be consistent with it because the mail-order specialty pharmacy my insurance uses is a mess."
- Anonymous
- Taken for 1 to 6 months
- September 13, 2022
"I’ve had RA for 20 years, treated with a dozen different meds. Started Rinvoq about a month after having Covid and soon developed strong headaches; I’ve never really had headaches before (I’m 54). It hurt to move my eyes; difficult to even watch TV. My rheumatologist told me to drop Rinvoq, and the headaches got better immediately… but didn’t 100% disappear. Now just low-grade. I started wondering if they were a leftover issue from Covid, so after 2 weeks, I restarted Rinvoq. Noticed my energy level and mood dropped right away, BUT joint pain did, too. I switched to taking it at night, and that helped with fatigue. But, a month and a half in, the headaches are returning daily, I’m dragging through the day, and I’m feeling discouraged, wondering if this will just be life from now on. Joint pain seems to be returning, too. I used to think crushing fatigue was a result of RA flares, and now I’m beginning to think it’s actually from the meds."
- Cha...
- Taken for 1 to 6 months
- August 27, 2022
"I was diagnosed with RA in 2019. I tried Rinvoq first with side effects of depression, acne, etc. I stopped taking that, then my RA doctor put me on Methotrexate, the shots. Lucky I had very good insurance, very expensive. The side effects are bad, I learned it was a chemo drug when all my hair fell out. Stopped taking that. My doctor said I would have to start infusion, really. I asked about other alternatives, e.g., diet or herbal remedies. The doctor did not want to hear it. I no longer have a job, no insurance, and no doctor. I keep looking for relief and pray every day to God. I pray each of you will find relief. Take care, and God bless you. CB"
- Flu...
- Taken for 2 to 5 years
- May 27, 2023
"My lab results are good. My level of fatigue did not change, but seems to work as good as Enbrel, Humira, and Actemra. They all worked well up until 3 years, and then they stopped. Coming up on the 3-year mark with Rinvoq."
- Ms ...
- Taken for 2 to 5 years
- March 18, 2025
"I suffered from severe pain all over my body from my teenage years onward, no one really listened to me about it. A few doctors diagnosed me with tendonitis. Well, finally as an adult, I decided to take control of my own health. After endless years of suffering, in 2015, at the age of 43, I finally went to a rheumatologist and was diagnosed with RA. I tried Methotrexate for some time, it did provide some relief, but not too much. I moved out of state in 2022 and found a great RA doctor. After explaining to me how much at risk I was of damaging my joints and my body if I did not treat this inflammation, I agreed with him to try Rinvoq. I have been on it for 2 years now, and it literally has changed my life. I can walk the mall without having to sit down, I can drive without my toes cramping up in pain. If I feel like I'm getting the sniffles (which is very rare), I will stop the drug for a week. My blood work has never looked better, my RA is finally under control."
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"I was using Plaquenil alone, then they added methotrexate, but it gave me headaches. So they eliminated it for sulfasalazine. It makes it less painful. But the doctor said I better use Rinvoq. I have been taking Rinvoq for a year now with Plaquenil and sulfasalazine. This addition makes me feel like I'm gaining my normal life back. The problem is that I started to have continuous UTI infections in the last 8 months. It is very painful. So I am considering changing meds."