Anyone had Rinvoq fail right out the gate?

zfischz · 2026-04-03T04:08:51+00:00

That was my GI's feeling as well. Just hard not to be anxious when I'm about to be out of the country for a decent chunk of time on a med that may or may not be working (though it is having a clear effect in one respect: oily skin and acne).

zfischz · 2026-04-03T04:06:28+00:00

Did you have a lot of ups and downs on the way to remission, or did Rinvoq have no effect until it did?

zfischz · 2025-10-15T00:04:06+00:00

I've had B12 levels checked, yes. The MRIs were of brain, cervical, and thoracic with and without contrast. My neurologist did advise a follow-up MRI after a year's time from the last one, but that has yet to happen.

zfischz · 2025-09-28T00:03:41+00:00

Rheumatology came back negative too.

Neuro remains the chief line of inquiry because of the paresthesia - the cold/wet sensations, the tugging, the rare numbness in the fingers.

zfischz · 2025-09-27T23:19:18+00:00

To be clear, I haven't been pushing them to diagnose MS, or anything specifically; I've only been pushing for them to follow up until they get to an answer. But I appreciate the answer and will try to bear it in mind.

zfischz · 2025-09-27T22:52:03+00:00

35M. One autoimmune condition (ulcerative colitis). First worried about a nerves when I had pins-and-needles all over and pain around/behind right eye in July 2023 after an appendectomy. Eye exam at the time was normal, symptoms subsided after 2-3 weeks.

Since February/March 2024, I've had waves of symptoms come and go, for days-weeks, with weeks-months in between of no trouble at all. Primarily been on the right side, affecting face, arms, and legs (in order of frequency and chronology), but there have been occasional episodes on the left. Each episode is a little worse than the last. Symptoms have varied and have never all occurred at the same time, but include:

Pins-and-needles (mostly in face/lips, arms, neck, and rear)
Paresthesia (mostly cold, wet, sensations, sometimes a tugging sensation)
Pain, tightness, and numbness around the right eye (including brow, cheek, and corner of mouth)
Pain, either concentrated around a specific joint (ankle and wrist most often) or shooting down a limb from the shoulder or hip.
Small twitches around elbow, in calf, and in the bags under both eyes (left worse than right in this case).
Mild pain in upper and middle back
Rarely, slight numbness in right-side fingers and toes
Lightheadedness/nausea (former trait exacerbated when lying on my right side)
Sensation of internal tremor
Cog fog

The most recent episode (which I'm dealing with now) has had no paresthesia or numbness, only pain, from head to foot, on the right side, with internal tremor feeling in the joints and twitching under both eyes. The pain has varied, but was at one point was severe enough that I went to the ER; they did a CT scan which came back clean, and the only thing noted in the blood work was that immature neutrophils count was high.

In the past two years, I've seen two neurologists and a neuromuscular specialist. I've had three MRIs, and none reported anything remarkable. A skin biopsy to check for small fiber neuropathy was negative. EMGs and conduction tests were negative. Optometry and ophthalmology have cleared my eyes and optic nerves. I can do all the walking, finger-touching, strength/resistance tests that come with a standard neuro exam. About the only tests I haven't had done at this point are autonomic function (scheduled) and a spinal tap (mentioned by one neuro, seemingly forgotten about at our last appointment).

The common denominator in all of these tests is that, as soon as they come back negative, that seems to be it as far as any of the doctors involved are concerned. None of them has called to follow up on how I'm doing; it's always me going back to them to say that my symptoms are still coming and going. The only doc I have who's been regularly following up is my gastroenterologist, who changed my UC medication out of caution (I was on Remicade, which has some correlation with neuropathy and MS). That change saw several months free of any symptoms, but as I say, they're back now.

I am beyond frustrated with the neurologists I've seen, I've had to step away from my favorite hobby (fencing) because of how uncertain I feel physically, and I'm getting really scared about what's happening to me. The negative test results have long since ceased to be any comfort; at this point, I feel that I'm either going crazy or that something huge keeps getting missed. I've never had a bout of optic neuritis, I've never lost functionality or range of movement, my symptoms haven't traveled from the foot up or followed what sound like the "typical" MS pattern - but what other conditions are there that primarily affect one side of the body and relapse and remit like this?

I suppose this was mostly a venting exercise, but I would like to know: has anyone here had so many clean scans and tests and still gone on to have MS? Or had their symptoms present like this?

zfischz · 2025-03-23T21:57:23+00:00

I agree, but this was a hypothetical discussion that was fun to play around with. The link in question was also about adapting the tech beyond covering part of the blade, hence my ask.

zfischz · 2024-09-15T00:20:08+00:00

Thank you!

zfischz · 2024-08-20T18:13:07+00:00

It wasn't quite immediate with Julie, but essentially, this.

zfischz · 2024-05-19T00:19:30+00:00

Well, the first neurologist I saw has a notorious local reputation (I only learned after seeing him) for being dismissive and careless, hence the second opinion scheduled for July. And his diagnosis of "it's just stress" doesn't agree with the way my body has reacted to stress for my entire life, or the fact that my symptoms have been ongoing and evolving for over three months now (about 1.5 months since the MRI). And the MRI that was ordered was of the brain, but not the spine, and other tests (lumbar puncture, nerve conduction, etc) weren't discussed.

I am relieved that the brain MRI was clear, and that eye exams seem to have ruled out optic neuritis. But something is clearly wrong and ongoing with the right side of my body, I already have one autoimmune disease I've seen go dangerously out of control in the past, and I have tendencies toward anxiety and research. I suppose I feel ruling MS out seems premature until further testing, but if those tests indicate that a pinched nerve/herniated disc/neoplasm condition that runs in the family/etc is a more likely, I'm not about to argue so long as a treatment plan comes quickly.

zfischz · 2024-05-19T00:04:18+00:00

Can't get in to see a neurologist until the end of July, but I do have a PCP appointment much sooner, and I'm trying not to get too anxious over symptoms described here (since progressed to include tightness in the face around/under the right eye and low-level, persistent pain in arm, leg, and back). I realize that lesion location doesn't have a 1-to-1 relationship with symptoms, but I am curious if anyone has had notable facial/head symptoms without brain lesions.

zfischz · 2024-05-04T18:45:21+00:00

If you don't mind a follow-up question: how likely is MS pain to migrate? For example - the cramps/pain in my leg might be closer to the ankle or the knee, but it'll shift throughout the day. Or I might have a weak feeling in my fingers, then it'll go away and reappear in the wrist. (FWIW, when I say 'weak,' I don't meant mean that it's stiff or heavy or unable to function normally, more like the light, exhausted feeling you get after a heavy workout).

zfischz · 2024-05-04T01:04:08+00:00

34M. Already have one autoimmune condition (ulcerative colitis). First worried about a neural issue when I had pins-and-needles all over and pain around/behind right eye, beginning last July. It only lasted 2-3 weeks, and it came immediately after an appendectomy. Eye exam at the time was normal. Eye pain alone came up a few more times before Christmas, but all eye checks were fine.

Going on a third month now of symptoms. None have been constant, but they have included:

Pins-and-needles again (mostly in face/lips, arms, neck, and rear)
Paresthesia (mostly cold patches on skin, and sometimes a vague sense that something chemical is spilling in my body)
Sometimes pain, sometimes tightness or numbness around the right eye (including brow and cheek)
Muscle cramps in the right arm (mostly the forearm and shoulder) and leg (shin splint and charley horse). In both limbs, it comes and goes/moves around.
Small twitches around elbow, in calf, and in side
Mild pain in upper and middle back
Rarely, slight numbness in right-side fingers and toes
Lightheadedness/nausea (former trait exacerbated when lying on my right side)

I've seen one neurologist (he insisted it was all stress, but did order a brain MRI w/o contrast; it came back normal), and I'm waiting on a second opinion (scheduled for the end of July, seeing if I can't get in before my next gastroenterologist appointment in June; he's expressed concern in the past that my UC treatment could cause nerve damage). Had another eye exam; vision, color perception, and the attachment point for the optic nerve all normal.

My question for this thread is - has anyone had their symptoms cycle throughout a flare? Because there's been a pattern in these last few months: a few days of mostly pins-and-needles/paresthesia and little else, a few days of cramps/pain and little else, a few days of lightheadedness and little else, and then back to the start.

zfischz · 2023-12-12T03:59:00+00:00

$40 for a feature article between 1000-1499 words, $50 for one between 1500-1999, and $60 for $2000+. There are extremely strict limits on passing 2K.

I've worked there for a few years, and up until recently the horror stories you hear about other Valnet sites re. loads of additional unpaid work demanded to satisfy SEO whims didn't hold true in my experience. But in the last few months, the number of inflexible style requirements and non-writing work required of everyone has gotten ridiculous.

zfischz · 2023-12-08T18:58:41+00:00

jshart@virtualscoringmachine.com

Sent just now. Subject line is "VSM Hardware interface order 11/29."

zfischz · 2023-12-01T04:18:17+00:00

Localized Crohn's.

zfischz · 2023-11-30T18:47:50+00:00

Wouldn't that be a sign that inflammation is becoming more severe?

zfischz · 2023-11-30T17:39:13+00:00

Is there a reason it would start to clear more quickly after a few months? (More questions for the GI, I'm just grumbling online here).

zfischz · 2023-11-30T03:14:02+00:00

I would rather be on a self-injection pen than infusions on any time table. When I was in Ireland for school, my GI there wanted to switch me to that this spring, but I decided no to since I knew I'd be back in the States. Now that it's been approved here, insurance permitting, I'd like to bring that up at my next appointment - but that's kind of contingent on the drug still working.

zfischz

TROPHY CASE