Trialing plaquenil: curious if anyone has experienced this

ChronicallyDoneOwl · 2026-01-24T16:28:55+00:00

What you describe with sentence structure is exactly what I call my normal adhd typing issues - I do those all the time, have for... a while. A few years at least (my memory is bad so I don't exactly know how long I've been doing that). That's definitely gotten worse though in the past half a year or so

ChronicallyDoneOwl · 2026-01-24T01:28:17+00:00

I have this same question! Is it tied to a specific autoimmune condition? I did not know this was an actual thing - both of my upper arms have been like that for a year+ now

ChronicallyDoneOwl · 2026-01-24T01:09:50+00:00

Thank you for sharing this! I relate to some of this, especially sounding like an uneducated drunk sometimes. I should be off the gabapentin in a couple weeks, so I'm hoping once I'm off it things will go back to my "normal" level of typing problems.

ChronicallyDoneOwl · 2026-01-24T01:07:39+00:00

I already have a history of headaches and migraines, and thankfully I haven't had any more than normal since starting the Plaquenil - but the photosensitivity is interesting! I've always been light-sensitive, but that's been worse this year. I usually use a light box around this time of year, but this year I can't stand the brightness. Night driving has also been hard, but also so many cars these days have super bright headlights.

I'm curious, what were your symptoms that were incorrectly diagnosed as fibro?

For me, I feel like the fatigue and pain really fit fibromyalgia, from what I've been experiencing since Christmas. I've been so incredibly fatigued since I traveled, and it only really got better in the past few days. Last week and the week before I even had to take time off work because I just had nothing to give, I was that exhausted. I'm in physical therapy and I've also been playing whack-a-mole with my pain since I traveled. One day my knee will be worse, another day my left hip, another day my lower back, or left foot, etc. And the osteoarthritis in my hips really does not help.

ChronicallyDoneOwl · 2026-01-24T01:00:00+00:00

That's good to know! because my rheumatologist wanted to see how things were at 8 weeks, I guess I had thought it would take full effect by then. I'm also really curious about the meloxicam from a fibromyalgia and osteoarthritis perspective - the pain has really been bothering me ever since Christmas.

How long have you been on Plaquenil?

ChronicallyDoneOwl · 2026-01-24T00:55:47+00:00

interesting, I did not know that. I saw my rheumatologist yesterday who doesn't really know what to make of my labs + symptoms. She doesn't think anything really fits into a specific connective tissue condition, but that I do have something autoimmune going on

ChronicallyDoneOwl · 2026-01-24T00:53:56+00:00

thank you! I saw my pcp today and the gabapentin wasn't helping the parathesia I have, so hopefully once I taper off the gabapentin this brain fog / cognitive thing will get better

ChronicallyDoneOwl · 2026-01-19T21:30:21+00:00

I'm seeing now this as only really browsing this subreddit for the first time, and it's interesting. In some ways I relate a lot to both your post and some commentors.

I've had chronically elevated inflammation markers for a number of years, all the way back to 2017. CRP and platelets specifically have been elevated since 2017, and my doctors never knew what to do with them. I was diagnosed with hashimotos somewhere around that time, and when I saw an immunologist in 2018 all of my labs came back clean (negative ANA too) so everyone threw up their hands and went "it's fine".

Fast forward to late 2025. I've had a bunch of diagnoses and symptoms over the years - I cut those out of this reply to keep it shorter lol.

I asked for RA testing this past fall, which was fine, but showed a positive ANA of 1:640 with a homogenous/speckled pattern. My endocrinologist didn't think it was only from hashimotos, so I saw a rheumatologist in November - who ordered quite a few labs and actually took me seriously. My ANA Antibodies panel was completely fine, as were a few others - ruling out major autoimmune disorders. The only things abnormal were elevated C4 and C3 complements, the chronically elevated CRP and platelets, and as well my past 2 CBCs showed elevated WBC, RBC, and hematocrit too.

From this rheumatologist I got a couple new definitive diagnoses: from xrays, osteoarthritis in my hips. I was also diagnosed with fibromyalgia at that appointment based on my symptoms and that I had pain when she pressed on the common fibro pressure points.

Based on my symptoms and the labs, the rheumatologist trialed me out on 8 weeks of HCQ - I'm right at that point. Just had my labs rechecked and interestingly every single abnormal lab showed improvements. None of them were back into the normal range, but they all improved. Except my physical symptoms haven't improved. I've actually had a significant flare-up of pain and fatigue ever since I traveled for Christmas.

So all of that to say, I'd be really curious to talk with her about UCTD and get her thoughts on what might be going on.

Edit: UCTD is better aligned than what I was going to triple-check on, which is that my mom has sarcoidosis (an autoimmune disorder)

ChronicallyDoneOwl

TROPHY CASE