Generic Name: Upadacitinib for Rheumatoid Arthritis (upadacitinib)
Rinvoq (upadacitinib) "I have tried just about everything under the sun for my RA. Was on Orencia for almost 5 years and loved it, until it quit working. I started taking Rinvoq on Nov 11th. Immediately noticed very oily skin and cystic acne. I usually never break out. In the first 5 weeks of taking it, my immune system weakened so much, I had a sinus infection, bronchitis, 2 UTIs, a yeast infection, and was constantly broke out with fever blisters. I also developed back pain so bad I could barely move in the morning. I'm very active so I wasn't sure that was the Rinvoq. I came off Rinvoq to give my immune system a chance to work again. After a week of being off Rinvoq, my acne cleared up, the infections and fever blisters went away, and my back didn't hurt anymore. Began taking Rinvoq again, within a few days my acne came back and my low back pain is just as painful as before."
Rinvoq (upadacitinib) "I've tried nearly every RA medicine under the sun. In the spring of 2020, I was put on Rinvoq. Within a week of taking Rinvoq, the swelling had decreased dramatically and my pain became bearable. I thought I had finally found the perfect drug! Fast forward 6 months later and the drug is keeping me sick about every 6 weeks. I've had multiple sinus infections with 2 of them causing vertigo which makes RA seem like child's play. I have to battle yeast infections, congestion, sinusitis, and horrible acne all over my chin. I am trying to take the drug just a few times a week to keep the swelling down but even that isn't working. I hear a swooshing sound in my ears and I'm always terrified I'm going to get vertigo again and be driving or in a store. What started out as a miracle drug for me has developed into a nightmare. I'm at the point where the benefits are not outweighing the side effects. For me the honeymoon phase is definitely over and I am ready for a divorce."
Rinvoq (upadacitinib) "2018-2020 severe pain and knee effusion not responding to Prednisone or Cimzia. Knee had to be drained several times and corticosteroid shots given almost weekly, against regulatory use, just to control the swelling and pain. Started Rinvoq in January 2020. Knee fluid and pain gone within less than three days — it worked very fast! RA went into remission and was off for two weeks starting September 2020. Labs done last week and ZERO inflammation markers in my blood work WHILE OFF MEDICATION. Just went back on Rinvoq at a maintenance dose for COVID-19 protection (reduce cytokine storm/inflammatory response in body). This drug has been a miracle in my life! It shouldn’t be overlooked. Great for inflammation/effusion/overactive immune response. My RA doctor was able to get my insurance to cover it ($3 co-pay)."
Rinvoq (upadacitinib) "Update to review of March 2022 asking if anyone had experienced moodiness or depression w/ Rinvoq. Now, I have another data point to add. Rheum MD advised me to temporarily withhold the Rinvoq twice since I left the March review: once for a week due to Covid booster shot, once due to respiratory infection (bad cold). Both times I withheld the Rinvoq, the moodiness, pessimism, lack of joy, depression began to lift on day 3 off the med. By day 4 off Rinvoq, I was back to my pre-Rinvoq, usual optimistic, sunny-disposition self. My husband said, 'Wow, I feel like I have my wife back! Where have you been?' Within about a week of restarting it, I began to feel the 'black cloud' descending again and lost my ability to feel joy or enthusiasm. Anyone else had this?"
Rinvoq (upadacitinib) "I’ve been on Rinvoq for 6 weeks now. It has caused a lot of dizziness and nausea. I’ve tried changing the time that I take it so that the worst of the dizziness was at night, but I wake up feeling very dizzy and nauseous. Has anyone else had this problem?"
Rinvoq (upadacitinib) "I have been on Rinvoq for almost 4 weeks. Didn't notice too much difference in my RA other than less pain and swelling in my hands and knees. All of a sudden, my legs turned red with severe pain and swelling below my knees into my ankles. I developed pitted edema with sharp pains in my legs. Also, sharp chest pains in the center, increased urination, nasal congestion with runny nose, and worst of all is the chills and sweats I'm dealing with. A sore throat appeared but did not last. I am really scared about the possibility of blood clots and intestinal bleeding. I do have interstitial lung disease, GERD, diverticulosis, fibromyalgia, and ulcerative colitis. This medication does make me very tired. After the swelling of my ankles got so bad, I stopped Rinvoq. Does anyone know how long it takes for Rinvoq to get out of the body after stopping? I feel so awful and am really scared of a serious blood and/or heart attack."
Rinvoq (upadacitinib) "I have taken just about every drug available for Rheumatoid Arthritis in the 20 years since diagnosis. Some did not work, some worked for a while, and others made me sick as a dog. I have had to take prednisone on and off (mostly on) for both decades. I have been suffering terribly this past year or so. My doctor prescribed Rinvoq and didn't say much about it. Within the first two days, I started feeling better. Almost a month in and I can say I feel like ten years have been lifted from me. It is like a miracle, I am tapering from the prednisone. I am so much more active now. I hope it continues to work. Oily skin and flushing, no big deal."
Rinvoq (upadacitinib) "I’ve had RA for over 20 years. Nothing has really helped. So the Rheumy said Rinvoq was the next step. The last 9 days have been a pure living nightmare. Headache 18 hours a day. Nausea and vomiting even when I sleep. Yes, I have awakened in vomit twice. I’m a 61-year-old woman. I’ve never done that in my adult life. It feels like someone is trying to dig out of my stomach with a knife. The rheumy told me this morning to stop for a week and call and tell him how I feel. The headache, nausea, vomiting, and stomach pain have almost completely resolved. Hmmmmmm...and sigh...now what."
Rinvoq (upadacitinib) "I've been on Rinvoq for almost four months. I didn't do well on methotrexate, leflunomide, or plaquenil. I felt better pretty quickly with Rinvoq. I still have minor flare-ups and dry eyes/skin. But recently, I developed a significant UTI that came out of nowhere. I left messages with my rheumatologist to see if it's the Rinvoq. No answer yet. Has anyone else had this happen?"
Rinvoq (upadacitinib) "I was on Rinvoq for 3 months. It caused extreme swelling in my legs, arms, hands, and overall body. The swelling was so bad that my shoes didn’t fit, and my skin hurt. It created such bad DVT that I ended up with a pulmonary embolism. This drug could have killed me. It also did nothing for my pain."
Rinvoq (upadacitinib) "About a week after I started Rinvoq, I began to get extremely oily skin on my face and shoulders. I am in my 50s and have acne all over my face, hairline (including the nape of my neck), back, and chest! I wash my face 3-4 times a day because it’s so oily! My skin was normal to dry prior to starting this medication."
Rinvoq (upadacitinib) "I’ve been on Rinvoq for 13 months now for RA. I have always been an optimist and have never had even a whiff of depression in my 57 years of life…until the last several months. My RA seems well-controlled on the Rinvoq, but my mood is getting worse and worse for several months now. I feel hopeless for no apparent reason. I have never had this symptom before, nor any other mental health symptoms. I am not usually prone to moodiness or anxiety. On the contrary, among my friends and family, I have traditionally been the most well-grounded person, the most likely to cope easily with emotionally difficult situations…until now. I guess this must be what depression feels like. Now, I find it hard to remember what it used to feel like to have joy. But, I do know that THIS IS NOT WHO I WAS for the first 56 years of my life. So, I’m wondering if this could be a less common side effect of Rinvoq? Has anyone else had new onset of depression or mood disorder with Rinvoq?"
Rinvoq (upadacitinib) "I’ve been on Rinvoq for about 4 months now. I didn’t notice a difference for the first month, but after that, I felt really good. Pain and stiffness in my wrists, hands, and joints did not interfere with my life, and I wasn’t thinking about it all day anymore. Now, in the last two weeks, I started getting stiffness and pain starting back again. I’m not sure what to do since the other pain meds didn’t help. It’s hard to live with extreme pain all day. Night times are hard, and my wrists and hands are so stiff and painful, but I can’t sleep."
Rinvoq (upadacitinib) "Rinvoq has worked well on my RA. Hands especially felt better within a few weeks. I have noticed a 'phlegmy' feeling in the back of the throat and am now experiencing facial pimples along my eyebrows. I have stepped up my face washing to see if that helps."
Rinvoq (upadacitinib) "I have been taking Rinvoq for two weeks now. This has been the best for my pain relief. I started with Humira and went to Actemra but nothing has worked as well as this. My pain is virtually gone and I am doing the things I enjoy again. Rinvoq is great."
Rinvoq (upadacitinib) "I have been on Rinvoq for RA for exactly one year and it has been amazing. My blood work is perfect. I did get shingles on the 3rd month after starting it but I got through it and have been doing so well. Hardly any pain at all and I have suffered for 22 years. The only side effects I have noticed is when my immune system is taking a hit, I get super tired and weak feeling (that’s how I know it’s working extra good). When the tiredness eases up then I know my immune system is relaxing. I have experienced extra oily skin but it might be hormones as well, hard to say. I recommend this to anyone suffering as it's great to feel this good compared to the other horrible RA drugs. Good luck to all!"
Rinvoq (upadacitinib) "I wanted to respond to Bob who posted on Sept. 26. I have had an issue with feeling very lightheaded all day. I never move my head quickly and get up very slowly in the morning. I have had severe dizziness with other meds. This is a terrible feeling and I hope that it fades for you as you adjust to this med. I never feel 'grounded'. I am giving this drug one more month for a total of six months. Best of luck to you."
Rinvoq (upadacitinib) "Have been on Rinvoq for 6 months now. Was receiving infusions for a couple of years of Actemra but kind of plateaued with that. Got off that just before Covid hit so was glad not to have to go into a med center to receive that. So have had good results, blood work is excellent and physically functioning fine. I am in my 50s and not having any other issues. Doctor wanted me to add Methotrexate just to really get me into remission but not a fan of that drug so staying with Rinvoq exclusively. Was surprised to see the negative reactions on here so guess I'm fortunate to have none!! God bless and good health!!"
Rinvoq (upadacitinib) "I have tried most other RA meds with varying degrees of success and side effects. I started Rinvoq about 6 months ago, and it has been good at reducing the joint swelling with only minimal side effects (runny nose, some coughing). I want to stay on it, but my insurance won't pay for it, they want to put me on Xeljanz. I know they are similar, but Xeljanz has a higher risk of blood clots, which I've had in the past. Damn insurance!"
Rinvoq (upadacitinib) "I’ve been taking Rinvoq for about 6 months and started it because I wasn’t getting enough pain relief from methotrexate. My pain has significantly improved but swelling has actually worsened. I now have edema in both legs, ankles, and wrists. I’ve also gained weight with this drug and not happy about that. I love that this drug is in daily pill form vs. a weekly pill or injection and I don’t have to stress about feeling nauseous and tired after my weekly methotrexate dose. Overall I’m happy to be getting a mostly pain-free life back, but am concerned that my doctor may take me off of it at my next appointment when he sees the amount of edema I now have."
Rinvoq (upadacitinib) "I started Rinvoq in Nov of 2020 after failing Enbrel. It did work for my RA, but then I suffered a saddle pulmonary embolism in Nov of 2021. This was provoked by the Rinvoq, according to the specialists at the hospital. No more Rinvoq for me. I almost died. I have now started Humira, hoping for the best."
Rinvoq (upadacitinib) "I took Rinvoq for two months from the samples my doctor gave me. I felt great! My insurance only covers a small amount, leaving a $1500 copay. I applied for help from Rinvoq but never got a response. I just can’t afford it."
Rinvoq (upadacitinib) "I am on Rinvoq for 9 weeks, and for me, it is a miracle drug for my RA. Nine months ago, I wasn't able to do any of my daily routines. I was on methotrexate for 3 months with not much improvement, and later my doctor added Avara to my treatment. After another 3 months, there was again not much improvement. Nine weeks in, Rinvoq, and I am back to work with very little pain."
Rinvoq (upadacitinib) "Tried methotrexate and sulfasalazine for nearly a year, no relief, nothing but debilitating side effects and disease progression. I’ve been on Rinvoq for two months now. I was on prednisone for six months and was told to taper off six weeks after beginning the meds. I felt so good after two weeks I began the taper. Off prednisone completely now, and let me tell you, Rinvoq is a game changer. My pain, which was constant and unbearable, has been reduced by 80%. I had bruising and some diarrhea for 6 weeks and now zero side effects. This drug has restored my hope."
Rinvoq (upadacitinib) "I have also taken many RA meds, including methotrexate, Humira, etc. I am on Rinvoq for the second time in about 4 months. My first few weeks on it, I quickly achieved almost no pain and absolutely no stiffness for the first time since RA developed. Then I developed cellulitis out of nowhere! I got scared and stopped myself. Went back to rheumy, he thought I should continue with it, that maybe it was not related. I have now been back on for about 3 weeks or more, and yes, virtually RA free, except I had my first diverticulitis attack last Monday (confirmed with CT scan). I thought I would keel over. My lower abdomen has not been the same since, and I am still taking this Rinvoq. I’m torn, I don’t know what to do next. Almost forgot, I also have this hypersensitive reaction to mosquito bites that cause huge welts since starting this medication."
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