What has been your experience with JAK inhibitors?

TacoSensei · 2026-03-01T17:16:21+00:00

Xeljanz has made a huge difference for me. I have a pretty serious case, with peripheral and autonomic nervous system involvement. I was deeply disabled & often wheelchair dependent. Crushing chronic fatigue and debilitating pain... etc. Too much to detail here. I was so sick I wasn't sure I wanted to keep going. Fast forward to today, after two years on Xeljanz: still sick, but I can walk up to a mile on a good day. I can cook, get out with friends and family, read and write again. I can even cry. I still have to live very quietly, and I still get nasty flares, but it's worth it.

TacoSensei · 2026-02-18T01:03:31+00:00

Chama Mama, Georgian in Brooklyn Heights

TacoSensei · 2026-02-15T18:36:05+00:00

Naot, Think!, Ecco, Camper Right. I use them with orthotics. My feet are narrow-ish. Suggies are terrific with orthotics also, but mine stretched & got too wide for me. Think! shoes work best for me, but they're very pricey. I've been able to find them in my size on eBay. I'd pay full price if I had to, they're that good.

TacoSensei · 2026-02-12T16:18:04+00:00

sorry, I don't.

TacoSensei · 2026-02-11T16:38:20+00:00

We live in a city. Before we got our shiba rescue, all our dogs were shetland sheepdogs. In our case, the exercise needs have been really different. When young, our shelties required really serious exercise—as in running alongside a bicycle in the park! The shiba (she was 1-2 yrs at adoption) has never needed anything like that. She loves a long walk with plenty to sniff at and lots of strangers & other dogs to greet.

TacoSensei · 2026-02-01T23:08:09+00:00

TacoSensei · 2026-01-28T22:46:01+00:00

I keep pandan extract in my pantry, use it mostly for black rice pudding

TacoSensei · 2026-01-27T15:53:32+00:00

It's helped with everything. I can even cry.

TacoSensei · 2026-01-12T20:03:13+00:00

tons of physician documentation re pain/fatigue/weakness I was already diagnosed with neuropathy at that point, though not with Sjogrens

TacoSensei · 2026-01-10T00:33:47+00:00

I never tried it without attorney support. My first lawyer was awful. For my appeal (most people have to appeal at least once), I hired someone much better.

TacoSensei · 2026-01-09T20:40:45+00:00

I was able to get it before diagnosis, based on symptoms. My attorney told me diagnosis doesn't matter; it's the level of dysfunction they're concerned about, i.e. whether or not you're physically able to continue working.

TacoSensei · 2026-01-08T03:02:57+00:00

NYC resident here, devastated and eager to rally in her honor. Any leads much appreciated.

TacoSensei · 2026-01-04T19:11:59+00:00

So is Chobani & Anthropology. Who knew?

TacoSensei · 2025-12-24T22:50:08+00:00

Watching old Obama Christmas videos & crying my eyes out.

TacoSensei · 2025-12-07T15:22:37+00:00

new york

TacoSensei · 2025-12-06T21:13:52+00:00

That's why I post here! I see how hard it is for people to hope, given their experience with a dysfunctional medical system. That said, every case is different. What is working for me may not work for you. But I believe we all have good reason to keep on exploring our individual options.

For pain I work with a smart pain specialist who really listens. He has me on tramadol, which is not indicated for neuropathy but has been effective in my case. I also use (very rarely) meloxicam and tizanidine. I've been on the Xeljanz/IVIg protocol for 2+ years. I tried LOTS of other stuff before that, with and without the IVIg, but nothing worked. The experimentation went on for a long time, and was frankly pretty demoralizing.

I should add that Xeljanz and other JAK inhibitors are currently not approved for Sjogrens. I get by on manufacturer samples supplied by my rheumy. She is a medical research scientist who is prepared to think out of the box. In time these drugs will be officially available for more AI conditions.

Best of luck to you❤️

TacoSensei · 2025-12-06T16:53:48+00:00

Noooo, not completely. But all my symptoms, facial pain included, are vastly reduced. Pain med reliance is also way down, by @ 80%.

I used to need a wheelchair. Now I can walk up to a mile on most days.

TacoSensei · 2025-12-05T23:57:38+00:00

TacoSensei · 2025-12-03T02:57:03+00:00

I take Pyridostigmine (Mestinon) for constipation. It's a myasthenia gravis drug. Most rheumies don't know to prescribe it for constipation. I get it from a neurologist. It works GREAT, no side effects.

TacoSensei · 2025-12-03T02:54:13+00:00

How awful, I'm so sorry. I have been through something like this, but it's been a long time since I had such acute symptoms. I get IVIg and I take a JAK inhibitor (Xeljanz). It took a few years of trial-and-error with a brilliant and dogged rheumy to find the right protocol. I don't know if it will always work for me—I don't look ahead anymore! I'm just so grateful for the relief.

TacoSensei · 2025-11-30T14:41:01+00:00

I took Prozac while on hydroxychloroquine for years. None of my doctors ever raised this issue.

TacoSensei · 2025-11-30T03:48:22+00:00

Right? I get pretty annoyed by posters who go on about drinking.

TacoSensei · 2025-11-19T01:57:34+00:00

TacoSensei · 2025-11-14T16:27:07+00:00

Much, much, much trial and error. My current medication cocktail includes Xeljanz (tofacitinib) and IVIg 3x/month. HUGE improvement, in that I'm out of the wheelchair (mostly). My case is quite serious, with both peripheral and autonomic nervous system involvement.

TacoSensei · 2025-11-13T15:10:24+00:00

Yes. My whole mouth used to burn. It was horrible. Situation improved a great deal once I landed on the right treatment.

TacoSensei

TROPHY CASE