A Drug That’s Working

By danny777

1 min read

After 6 months trying Taltz…I was on and off struggling to button my shirt. My rheumatologist saw me and said, “That’s over. Going to try Rinvoq.”

Experimenting with Rinvoq

I started on Rinvoq in August. It took a bit to work but now, I spend much of my days, symptom free. Yes, I have PsA not RA.

Rinvoq is very strange. But after almost two years without a working drug, I am starting to remember what life was like without chronic pain, despite my efforts, controlling much of my life ... even having cognitive deficiencies.

Rinvoq is strange ... I have to take the daily pill - plus or minus twenty minutes from the same time. If I miss that time by an hour ... I’ll have a VERY bad day.

The weekend before last, I slept in ... Sat and Sunday. I take Rinvoq at 5:30 each morning. Waking up close to seven meant I was outside the window. Those days were lost.

Sunday afternoon I was convinced it already stopped working ... but nope ... my lost days were because I took the pill 1.5 hours late.

Last Sunday, I took the pill at 5:30 ... as scheduled. Except we had rolled the clocks back ... so I was an hour off. My day was lost ... out of control pain.

Rinvoq is strange but I am thanking God for it working so well.

How much does nutrition matter?

Side point ... I had a BK burger 1/2 hour later and the pain was crazy bad - I left the office and went home. An RA friend told me she could not eat BK ... or Hardees(?) because of a tenderizer they use ... I don’t know. I had a McD burger today - no reaction. So ... no more Whoppers

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RHall Community Admin
Hi <inline-mention username="danny777" user-id="3157557"/> thanks for sharing! Also you mentioned having PsA. You may be aware already but if not, we have a PsA community that may be of interest! (<a href='https://psoriatic-arthritis.com/' target='_blank' rel='noopener noreferrer ugc'>https://psoriatic-arthritis.com/</a>) -Warmly, Reggie, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> team member
Erin Rush Community Admin
I'm glad you're doing so well, overall, on Rinvoq, <inline-mention username="danny777" user-id="3157557"/>! That's great! And, as Reggie mentioned, we do have a sister site dedicated to PsA. But, please know you are welcome here, too! And, that's interesting about the tenderizer used in certain fast food items. I had never thought of that, but it makes sense. Without your friend's comment, I would never have even guessed at what you could have been reacting to in the burger! Thanks for sharing and I hope Rinvoq keeps working well for you. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
David Advent Moderator & Contributor
Thanks so much for sharing your story with Rinvoq. My rheumatologist had suggested it for me previously because I hated doing injections/needles, but I decided to stick with Humira/Hyrimoz. The timeframe within you take the meds and then feel the pain is incredibly narrow; I'm so sorry to hear that! But it sounds like you have a great routine determined to mitigate those flare days (currently having one now). I'm wishing you the best! David (RheumatoidArthritis.net Contributor/Moderator)
1. 2ydsae Member
 Thank you. Yes, I am in communication with my doctor. Just wondering what others thought of the RX or possible options they have had good experience with.
2. Richard Faust Community Admin
 Hi <inline-mention username="2ydsae" user-id="3219845"/>. Unfortunately, treatments for RA are a lot of trial and error and what may work great for one may not at all for another. It is great that you are in communication with your doctor. Given that you are having issues with the Arava, it may be worth asking about getting a letter of medical necessity for the Humira and filing and appeal. I'm tagging our patient leader <inline-mention username="Daniel Malito" user-id="3160778"/> because I believe he has had some success on this front and may be able to offer insight. Wishing you the best. Richard (RheumatoidArthritis.net Team)
danny777 Member
Sorry to hear you are having a flare day. Like you, I’m not so good w needles or even injection pens. 😂 I did a Taltz injection pen in the dark…half asleep. Unfortunately, it was upside down and shot the needle into my thumb…yeah, pills suit me better.
1. christine.laaksonen Community Admin
 That is great news that you're doing well, the Rinvoq is working, and you're not on such a tight schedule, <inline-mention username="danny777" user-id="3157557"/>! Thanks for the update. (And those needles really can give "wake up calls"!) -- Warmly, Christine (Team Member)
2. latoya.juniel Community Admin
 <inline-mention username="danny777" user-id="3157557"/> Wishing you much success Rinvoq! When you find something that works it's a great feeling. And no more needles! (haha) All the best, Latoya (Team Member)
Beetolaro Member
Good morning all, I am new to this site and would like to know if anyone is taking a combination of Rinvoq with methotrexate. I am currently taking 15 mg of methotrexate orally once a week. I was diagnosed at 47 with RA and am now 64. Over the past couple of years, my RA has progressed to the point of having to supplement with another medication. I tried Humira and got an allergic reaction to it. I tried another medication that gave me a pretty bad case of shingles. My rheumatologist has now recommended Rinvoq along with the methotrexate. I am very nervous to try these two drugs in combination, but I do need some relief from the pain. Can anyone help me? Thank you so much and I look forward to being a part of this group 😊
1. Richard Faust Community Admin
 Hi <inline-mention username="Beetolaro" user-id="8793404"/>. I can't personally speak to this combination, but I want to share with you this article from our contributor Amanda on her road to combination therapy: <a href='https://rheumatoidarthritis.net/living/dmard-combination-therapy' target='_blank'>https://rheumatoidarthritis.net/living/dmard-combination-therapy</a>. Do you know if your doctor is recommending a combination solely to try to up effectiveness or also to try to avoid antibody generation and ensure longer efficacy of the treatment? Hopefully others will also offer their experiences. Wishing you the best and please feel free to keep us posted on how it goes. Best, Richard (RheumatoidArthritis.net Team)
Beetolaro Member
Thank you Richard! The article was very helpful and gave me some peace of mind about combination therapies. My doctor is concerned that the Methotrexate alone was not working well enough. My pain level is very consistent on a daily basis. He was hoping that the Rinvoq in combination with methotrexate would help to alleviate my pain. I just received my first three months supply and will be taking my first pill soon. I have been under the weather and since I am scheduled to take my weekly dose of methotrexate this evening, I thought I would hold off a few days before adding the Rinvoq. I will definitely keep everyone posted on how that goes for me and would welcome any further comments or feedback. 
1. Daniel Malito Moderator & Contributor
 I just want to add that I have been on methotrexate with just about every other drug under the sun, and while it didn't work for me long-term, the side effects in my case weren't too awful. Just want to reiterate you are not alone and let us know if you need anything! Keep on keepin' on, DPM
Beetolaro Member
Thank you so much. Hearing from you and others has already helped my mental well being. The hardest part for me is trying to keep up with everyone without complaining about a bad joint or fatigue, etc., since it is not an issue that is outwardly noticeable. The methotrexate did work very well for years. It seems like I got my first really unbearable flare when I came down with covid in November 2022. The flares since then are almost continuous, if not in my feet, then in my ankles, or shoulders or knees or all at the same time. Today, it’s my ankles, wrists and bicep area. Tomorrow could be totally different. If anyone has any personal experience with Rinvoq, I would certainly love to hear about it. Since it is the newest treatment out on the market for RA, I am a little afraid of the side effects. Thank you again for your support! It means a lot ❤️
1. Richard Faust Community Admin
 Hi <inline-mention username="Beetolaro" user-id="8793404"/>. So glad the information and experiences of others have been helpful. I noticed you mentioning the hardest part has been keeping up and the not seeming to complain since the condition is largely invisible. I just want to share with you this article explaining RA to family and friends: <a href='https://rheumatoidarthritis.net/forums/how-do-i-help-friends-and-family-understand-my-ra' target='_blank'>https://rheumatoidarthritis.net/forums/how-do-i-help-friends-and-family-understand-my-ra</a>. I just added a comment at the end about the difference and difficulty that the invisible aspect adds, although I will note that there are a lot of great comments and information there. Also, in this article Lynn Marie shares her experience with Rinvoq: <a href='https://rheumatoidarthritis.net/living/rinvoq-treatment-review' target='_blank'>https://rheumatoidarthritis.net/living/rinvoq-treatment-review</a>. Of course, what works for one may not for another, as Monica's experience with Rinvoq (see here: <a href='https://rheumatoidarthritis.net/living/rinvoq-side-effects' target='_blank'>https://rheumatoidarthritis.net/living/rinvoq-side-effects</a>) illustrates. Hoping that you are one of the one's it works for. Best, Richard (RheumatoidArthritis.net Team)