RINVOQ Medication for RA / RD
RINVOQ medication (upadacitinib)
The latest treatment that I get to try for rheumatoid disease (RD) is the new RINVOQ medication from AbbVie. RINVOQ is the brand name for the tablet upadacitinib, approved by the FDA to treat rheumatoid arthritis (RA) last August (2019). During clinical trials it was also called ABT-494, in case you follow new RA drugs in the pipeline.
The last few years I’ve experienced dramatic disease progression and several surgeries as well as additional extra-articular disease, so I am very glad to finally have this opportunity to try another medication for my RD. There are so many things I’ve learned from these experiences that I want to share with you to help bridge the gaps in knowledge about RD and continue to work to improve care. But first things first: the RINVOQ.
Are you taking RINVOQ medication for RA / RD?
Last week I learned about an interview for a research project about RINVOQ and RA. They want to learn about patient experiences and they are offering $150 honorarium for your time.
So I did the interview over the phone and some of you may be able to do it as well. You must have either started RINVOQ already or be in the process of starting the medication. Email me if you want to do the RINVOQ interview and I’ll send you the info.
What is the RINVOQ medication?
RINVOQ (pronounced rin-voke’) is a JAK 1 inhibitor. This is the third JAK inhibitor to be approved in the US for the treatment of RA, but it is the first one that is selective for JAK 1. Some of you may have taken Pfizer’s Xeljanz (tofacitinib) that inhibits JAK 1 and 3, or Lilly’s Olumiant (baricitinib) that inhibits JAK 1 and 2. And yes, there’s one more JAK inhibitor in the pipeline called filgotinib that also inhibits JAK 1.
What does a JAK inhibitor do? There are actually some YouTube videos on how JAKs work and what blocking them does, but it’s still pretty confusing if you’re not an immunologist. (Maybe I can get KB to write about that for us sometime!)
I found a fairly simple description on the AbbVie site for doctors: “By binding to JAK, RINVOQ is thought to block the recruitment and activation of STATs, which helps disrupt the pathological inflammatory cytokine signalling cascade in RA.” So the main thing to remember is that JAKs play a key role in immune signaling, and a JAK inhibitor interferes with that process.
Does the RINVOQ medication work?
Some of the clinical trial data show that RINVOQ could perform better than other RA / RD medications. But unfortunately because of differences in our immune systems, there is not yet a treatment that works for every person with RD. We’ll talk more soon about research on tests to help indicate which treatments will work better for specific individuals.
I’ve been taking RINVOQ barely a month now, and I want to write more soon about my experiences with it. It’s going to take at least a whole other post to talk about the medication experience, support program, and side effects. Meanwhile, please share your experiences!
Are you interested in sharing your RA story?
We are looking to speak with people living with RA who take RINVOQ to learn more about experiences with this medication, and how they made decisions to start RINVOQ. It is a 60 min phone call, and there is an incentive of $150 for your time, payable by check or PayPal.
Knowvanta interviews patients about different diseases on behalf of medical researchers. We roll up the results all together (nothing is shared individually) to summarize what the overall experience is. The results are used to help medical researchers develop better drugs. We do not take any personal information, other than your address or email so that we can send the incentive. This information is not passed on, and is deleted after the project is complete. Feel free to ask any other questions.
WHAT DO YOU THINK? HAVE YOU TRIED JAK INHIBITORS FOR RA / RD?
Recommended reading
- Efficacy of Xeljanz, Biologics, & DMARDs in Rheumatoid Disease
- Mind-boggling! – Aftermath of Tofacitinib FDA Hearing Part 2
- What Causes Rheumatoid Arthritis to Trigger?
I have been on Rinvoq for 6 months with a 10 day break for antibiotics for a sinus infection. I was hopeful since it is similar to Olumiant, another JAK inhibitor, that worked well for me for 1 year then stopped working. I’m in more pain than ever and new joints have begun to hurt. I also have pain in my legs and arm that feels like muscle pain but stretching and exercise don’t seem to help at all. My Rheumatologist has ordered a CT scan to see if anything else is going on. I have been on most biologics and have yet to find something that works. In March it will be 8 years since my diagnosis. I’m also taking Arava (leflunomide) with the Rinvoq. Everyone is different but I hope this information helps someone.
Hi Karen. It’s very interesting that a JAKi stopped working for you. When they created Xeljanz, they hoped that wouldn’t be the case since the body doesn’t create antibodies against synthetic chemical medicines the way it does with biological medicines (like Humira).
The leg / arm pain could be connective tissue related and still be the RD – but I’m very glad to hear that you have a doctor who wants to help figure this out. Good luck.
Kelly, I am so happy that you seem to have found something that works for you! I actually have an appointment with my Rheumy tomorrow and as it happens the RINVOQ is something she wanted me to consider! Thank you for all of the information and personal experience sharing. I think I know what I will try next!
Hello Karen, first off I’m sorry for your pain & all that goes with RA. I’m also on Rinvoq for RA x 4 months now except for 7 days off for eye infections..I’m glad I read your post, I too am having more pain than ever, fatigue, extreme leg & foot pain along with wrist & fingers! I’m on Rinvoq alone, will see my Rheum in July , not sure if I can wait that long. Rinvoq alone is not helping me. I’m a pretty positive person but the flares one after another is getting to me. Not sure what takes place next. I hope your MD has found a resolution to your pain by now.
Stopping XeljanzXR now after a few years of limited success. Success for Dr.s seems to be getting the test numbers in line but there is so much more. If my test numbers are in “Normal” range then I should have some relief, no?
I am in process of getting authorization to switch to Rinvoq in a month or two. I can only hope that I get some degree of relief from Rinvoq as I have tried so many other meds.
HI Kelly! I will be praying that the “R” will help you! I have been on Xeljanz for 6 years this coming month and it has been a miracle for me. I was very nervous to try it as it was so very new at that time and my rheum had not been prescribing it. We decided since my feet were in so much pain every day despite the MTX, to give it a try. I had just the year before tried Orencia injectable with no pain relief and a couple of concerning side effects. After the success of the X, 4 years ago we decided to ditch the MTX and I actually felt better without it. A couple of years ago I started to have more early morning pain and pretty bad stiffness until about noon, not wanting to try another drug, I decided to add in some CBD tincture and see if all the hub-bub about it was true….it is true for me. The very first night I started it I was able to sleep all night and hop out of bed. I did run out of it this past summer so decided to see what it was like without it, yep, the pain and stiffness came back. I showed my rheum the bottle when I first started it and he has no problem with it. Now I take it faithfully 3 times a day with my 2 a day X pills and feel pretty decent most of the time. I have other issues, but without the RD screaming at me every day, I feel like I have a pretty good life right now. I hope the R will give you the same.
thank you so much Nancy. You’ve held my hand for so long.
Kelly – good luck on this new med. I’ve been on Xeljanz XR for 3 1/2 years now with mostly very good results. I like it better than the weekly injections because if I feel a cold coming on, I just stop taking it and I haven’t been as drastically sick as I was while on the weekly, bi weekly or 6 week infusion options. I wish you good success.
I was diagnosed with seropositive RD in March of 2014. I started Methotrexate (MTX) and responded well. Within 4 months I felt back to normal (well, a “new normal”). But then breast cancer halted RD treatment for a year. My docs said no MTX during chemo, surgery and radiation, so the RD symptoms returned and increased. (I am now cancer free.) Afterwards, I restarted MTX. At first 15 mg weekly worked; then 20 mg did the trick; then 25 mg seemed to work for about 6 months before failing this past fall. Dr B, my Rheumatologist, and I decided to try Xeljanz for several reasons. First, my history of cancer makes us leery of anti-TNF medications. Second, I live in a very small community in Alaska. I can get medication by mail, but specialty meds that require refrigeration, and cannot be frozen, are trickier. Xeljanz is a daily pill, not a shot or infusion. Third, Xeljanz has been in use now for about 5+ years and Dr. B has seen good results with his other patients and in the rheumatology community as a whole. I started Xeljanz 5 weeks ago and am already feeling improvement. As with other RA meds, the effects are slow and incremental. I didn’t really notice a difference until after 2 weeks, I realized I could squeeze my toothpaste tube without difficulty. After 4 weeks I was making morning coffee and noticed my wrists weren’t aching. This morning, strapping on my boots to get firewood, my ankles weren’t swollen. I am still taking the 25 mg MTX once a week along with the Xeljanz. Our plan is to wait three months to feel the full effects of the Xeljanz. Then we’ll start reducing the MTX little by little to find the smallest dosage of MTX that still gives me the relief I want. I am hoping to be able to stop MTX altogether, as my goal is to get maximum results with as little meds as possible. It’s still very early for me, but so far, so good. I sincerely hope you respond well to Xeljanz, too, Kelly.
I hope you have good results with Rinvoq. I’ve been on it for over a year now and it has done well for me. Since I was on the study protocol it was a bit of a rough start, but once I was switched to Rinvoq it has been a lot better. I don’t have the up and down daily swelling I had with Plaquenil and methotrexate. I am currently on the 15 mg, but my doctor has considered moving me to the 30 mg dose. I was diagnosed back in 2005 with RA and the alphabet soup that goes with it. I have tapped out of being able to use Methotrexate since I became allergic to it and can no longer use Enbrel, but continue to use Plaquenil and now with Rinvoq it has helped. My morning stiffness is better than it has been in ages and I’ve finally been able to grow my hair out. Not to mention having fingernails again. There are still good days and bad days, but so far my flairs are not as frequent as they were before. I have continued to have trouble with my Osteoarthritis, but have not read up on its effectiveness in regards to Osteoarthritis. I still have to plan my days out and try to be smarter about how I handle lifting or walking, but I am enjoying the progress this has brought to my days. I just hope I can afford it once I am no longer in the study group.
I was part of the Phase3 clinical trial for Rinvoq. My Pain and swelling joint count went from 40 to 2! It was the most effective treatment I’d found in over a decade. Unfortunately, I was diagnosed with prostate cancer and they wouldn’t let me stay on the drug. I have taken Xeljanz since. It helps, but is not nearly as effective as Rinvoq was.
I wonder if you go back to it once the cancer is dealt with since you can take the Xeljanz?
Even though they couldn’t keep you in the study, RINVOQ’s safety profile is almost identical to Xeljanz. Just curious, Fred. Best of luck to you.
What is the cost of the drug if no covered by Medicare ? Does anyone know
Rinvoq is $5100/month with no insurance. My mom has severe RA and we have been through nearly every treatment with either an allergic reaction or no relief. Rinvoq is the first one that worked and was safe for her. Medicare approved the medication but she is still responsible for almost $2000/month, not doable for ones who struggles financially as it is. Their patient assist program denied her because her insurance would “cover it”. Our last option is now chemotherapy. I try to hold onto hope for her and keep her spirits up, but nights like tonight all I can do is scour the internet for any program that might help her. And cry.
Hi Kelly, that great news this new drug ( RINVOQ ) is working for you.
Thank you so much for sharing your semi-success with RINVOQ; I hope you will continue keeping us informed. I’m praying it helps you even more!
Thank you so much for sharing your story about RINVOQ; I hope you will continue keeping us informed. I’m praying it helps you! I haven’t tried it yet but in our small town, our only Rheumatologist is moving to IL March 10th and we are all pretty shattered by the news. I’m also praying for you!
I took Xeljanz (another JAK inhibitor) and it was my magic bullet! I felt like I didn’t have RA anymore— my bloodwork looked like that of a “normal” person. Unfortunately I had to take a break from it because it is not safe for pregnancy and we’re doing fertility treatments now. I’m back to Cimzia but am so happy to know I have Xeljanz waiting for me.
This also has been the best for me. Had failings in many others but this got me to:- Not require Wheelchair, Walk without aid of Walker or Walking Stick. A miracle Drug for me now for the 4 years now and fingers crossed it does not fail.
I am so excited to see this. I have an appointment next week with my rheumatologist to discuss changing from Xeljanz to Rinvoq. I do not want to go back to shots and the Xeljanz is not working as well as when I first started. I still take MTX. I don’t see that being stopped any time soon. And maybe it will help with the OA? Fingers crossed. I asked about the Rinvoq and my doctor mentioned the Olumiant too. He said they might not work very differently than Xeljanz and the only way for me to know is to try it. He recommended Orencia last year. I do not want to do shots again. I will try the Rinvoq and see how it goes. Thank you so much for this post Kelly and good luck to you on the Rinvoq.
Hi Kelly, I am so happy to see this post. I have an appointment with my rheumatologist next week and will be discussing moving to Rinvoq. I am currently on Xeljanz. Seeing this post is perfect timing for me. Good luck to you on Rinvoq. Thank you!
Hi, 41 years with RA here. Tried it all, pretty much, at this point. Loved the idea of making $150 for telling my story, (above) but it says it only wants those who took RINVOQ. I took Zeljanz. Good luck with your success. Just an FYI-I had complete remission for 17 years with antibiotic therapy. What a Godsend that was! Am now on a IL6 inhibitor which works well. (Actemra)
With the old meds (non-biologic) the truth is you get a couple years usually. Then the disease breaks through again and you must switch. The antibiotic works on the premise that RA is caused by a mycoplasma bacteria infection. I think there is something to that, or why else would it have worked for me for 17 years? It would still be working now, but I didn’t switch off to a different form as per protocol, every 5 years. (check out Dr Thomas Brown & the road back foundation.) Good luck, and never give up!
I was on this med for three weeks and I had terrible adverse reactions. I had to come off it. I’d be happy to do the interview if it applies to Canadians too.