RINVOQ Medication for RA / RD | Rheumatoid Arthritis Warrior

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 medication RA RDRINVOQ (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

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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19 thoughts on “RINVOQ Medication for RA / RD

  • February 17, 2020 at 12:16 pm
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    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.

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    • February 17, 2020 at 12:30 pm
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      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.

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    • February 18, 2020 at 2:13 pm
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      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!

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  • February 17, 2020 at 12:27 pm
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    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.

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  • February 17, 2020 at 1:48 pm
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    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.

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  • February 17, 2020 at 3:43 pm
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    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.

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  • February 17, 2020 at 4:01 pm
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    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.

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  • February 17, 2020 at 7:25 pm
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    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.

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  • February 18, 2020 at 11:09 am
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    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.

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    • February 18, 2020 at 12:59 pm
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      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.

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      • February 18, 2020 at 1:50 pm
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        What is the cost of the drug if no covered by Medicare ? Does anyone know

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  • February 18, 2020 at 3:33 pm
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    Hi Kelly, that great news this new drug ( RINVOQ ) is working for you.

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  • February 18, 2020 at 5:32 pm
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    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!

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  • February 18, 2020 at 5:36 pm
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    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!

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  • February 18, 2020 at 5:45 pm
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    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.

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  • February 18, 2020 at 9:16 pm
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    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.

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  • February 18, 2020 at 10:55 pm
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    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!

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  • February 18, 2020 at 11:34 pm
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    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!

    Reply
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