That One Time with Rinvoq: My Experience with a JAK Inhibitor

Over the years with my RA diagnosis, I have tried many medications.

I tried many of the TNF inhibitors, the JAK inhibitors, DMARDs, NSAIDs, and good old-fashioned steroids, all with varying success.

What has worked best for me so far

I love me (and hate me) some prednisone; methotrexate gets a thumbs up from me. And then, there is my beautiful shining star called Orencia.

These are the medications that work best for my rheumatoid arthritis management. I’ve written about my experiences with - actually, now that I think about it - all three of those medications so I won’t harp on them too much.

Orencia began to lose efficacy

If you have read any of my articles from the past year or so, you would have seen that my darling Orencia began to lose efficacy.

How I could tell it wasn't working as well

It was a slow decline at first. I felt just a bit more symptomatic, I felt fatigued towards the end of the infusion cycle, and I had to bump up the prednisone many times to get through mini-flares. But, I was still managing.

Back in November (soon after my little kitty, Sunsilk, passed) the Orencia said “Deuces!”, grabbed its luggage, and took off down the winding path.

My rheumatologist and I talked about options but decided to stay on Orencia to see if my flare was due to stress/grief.

December came and went and I was exhausted. My body’s housemate had gone for good.

Why I decided to start Rinvoq

Unfortunately, there were only other options (the others were too similar to medications I had already tried and my doctor knew they would not be successful): Remicade and Rinvoq.

My rheumatologist recommended (for me, personally) that I do not start Remicade until after I got the vaccine. At the time, we didn't know when that would be and I couldn't be off meds for that long.

So, we tried Rinvoq. I don’t think either me or my rheumatologist were convinced it would work well as I had tried Xeljanz. But, we gave it a shot.

My experience with Rinvoq

I started Rinvoq at the end of January 2021. I took one pill every morning.

I only experienced one side effect. I noticed that my methotrexate (MTX) side effects were slightly exaggerated. I didn't experience intense differences, just a little more fatigue and a little more bruising.

There was nothing alarming about these, so my doctor and I kept the note on the periphery.

How I felt before starting Rinvoq

How I felt before starting the Rinvoq and after quitting the Orencia IV infusion: tired, swollen (which is quite rare for me), foggy, some disability, difficulty with stairs, no extra strength in joints.

Two weeks in

How I felt 2 weeks into the Rinvoq: much the same except some of the swelling was better, BUT I was fatigued beyond reason.

We checked my blood work; there was nothing to suggest fatigue (like anemia, etc). That’s a good sign, right? The swelling was going down?

How I felt a month in

How I felt a month into the Rinvoq: same; except I started losing fine motor skills and I was purely exhausted.

The question was, do I hang on and see if I improve, or do we go back to the Orencia? Remember, I am a medicine hopper.

Well, I didn’t have to answer the question.

Until...

I started dropping things and at the pharmacy, I got stuck squatting down to a bottom shelf to get something. I had to crawl down the aisle and use an end cap to hoist myself up.

I think that answered the question, right? My doctor immediately put in a new prescription for the Orencia IV.

Maybe JAK inhibitors aren't for me

I guess JAK inhibitors just don’t work for me. I tried Xeljanz a few years ago and it was basically like eating candy. It did nothing nor did I have side effects.

We thought that maybe, just maybe Rinvoq would do something since I felt my MTX side effects a little more (Rinvoq and methotrexate work well together). But, alas, it also did nothing.

But, I would just like to say that I adore my rheumatologist. He was extremely concerned about the fatigue I felt. He knew that the other symptoms would follow the fatigue.

I just restarted the Orencia and I will write an article about that soon!

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